Good News!

The experts at Dana Farber have completed their review of Kelly's slides, reports and films. Their opinion is that the area of concern noted in the July MRI is not cancer cells, but rather tissue damage caused by the radiation. Considering that, they have placed Kelly under close watch and wait status and will perform another MRI in 4 months. That time frame will allow Kelly's body more time to heal from the radiation. For now, a mastectomy is not necessary. That is pretty big news, and certainly a relief to everyone!

We are all cautiously optimistic that the initial two lumpectomies, subsequent radiation and treatment with Tamoxifen may have done the trick. But we are wise enough to defer to those experts who say that they must closely monitor Kelly and can't pronounce her out of the woods just yet. We are in total agreement that it is best to gather more data points before taking irreversible surgical action. The doctors feel that watching and waiting will not put Kelly at any further risk, for now.

There have been many, many people praying for Kelly, and we thank you for those prayers. They certainly seem to be working. Please don't let up now - she still has a ways to go.

I just spoke with Kelly and Eric. We all agree that this has been an emotional day, one that has all of us drained. I wish I had the energy to call each and every one of you to share this good news personally. For now, this is the most that I can do, so please don't feel offended that I didn't call.

Once again, I encourage you to follow the link to Kelly's Journal found at the top left of this page. I expect she will be ready to post there again in the next day or two.

Thanks so much for caring.

Catching Up

It has been quite a while since I last posted. I feel like I have been on medical leave. My condition? I have been experiencing brain drain.

I thought that when we returned home from New York we could parlay some of the steam roller action we had been living into a whirlwind of activity at home. It was a good plan. Our non-stop days of grand kids and travel suddenly seemed like a run away train that jumped the tracks. Screeeeeeech! Everything came to a grinding halt. Time for some much needed, but not planned for, down time.


It is good to be home, good to see our friends and good to sleep in our own bed. We have a list of "things to get done before we go back to Albany", but in the week that we have been home we have barely made a dent in it.

Thanks to those of you who have called or sent notes, wondering what has been happening. Simple explanation: brain drain. We are starting to get a grip on things again. It is time to get back on track.

Kelly had her appointment with the plastic surgeon in Boston on Tuesday of this week. I think it went as well as any of us could have hoped. Let me point you to Kelly's Journal for a reasonable summary, rather than have me go over it all tonight. You will find a link on the top left of this page. I will fill in with more information as it becomes available.

Kelly has a lot to consider now. She is still waiting for the Dana Farber staff to pass judgement on the slides, reports and films that St. Peter's in Albany sent to them. It is nerve wracking to wait for this info as it can impact on the total treatment plan depending on whether the two medical institutions agree or disagree on the diagnosis and treatment. We are back in the waiting room.

In the meantime, life goes on and we try to make the best of it. We are getting active in our community again, we are keeping doctor and dental appointments, we are back to making plans for finishing the basement and we are gathering our strength.

Thanks for all the love and support you have all been sending our way. I feel like we are storing "nuts" of love and kindness for the long winter ahead. Please continue to keep us all in your prayers.

On The Road Again

It's Sunday evening, almost 9 o'clock. The children are tucked into their beds. The men are reviewing the latest news about Hurricane Ike. The dishes are washed and our bags are almost packed.

We decided today that it would be best for us to head for home. At this point we are just marking time here, waiting until Kelly's surgery is scheduled. Our time will be better spent taking care of business at home, knowing that we will be back here later in the fall for Kelly's surgery.

We will leave tomorrow morning and head west to Freedom, in the Southern Tier of New York State. We will spend the night with my baby sister, Annie, and her family. We don't get back to western NY too often to see family so this will be a good opportunity. We will take our time driving back to Griffin. We need time to decompress and time to get a little extra sleep. Can't wait to be back in my own bed!
We should be back by the middle of the week.

Olivia is pretty sad tonight. She doesn't want us to leave. Sam is a little more indifferent, but he will surely be asking for us the minute we go. But, go we must. It has been a long month away from home. We really enjoyed our vacation to Cape Cod and we loved being near our family. Still.....home is in Griffin and it is time to be there for a while.

We had a nice family dinner this evening. Kelly and Eric joined us. Every one was in good spirits and the food was excellent. The little ones entertained us as only they can. Liv made one of her special concoctions for dessert(remember my turkey and chocolate sandwich?). This time it was chocolate sauce, sprinkles and walnuts. It was a big hit with Eric. We had a tasty apple pie as a back up.

I will miss times like these. I will miss spending time with the munchkins, telling them stories, exploring nature, role playing together. it is hard to see their tears when we go. As I always tell them, "We'll be back."

I will continue to post here, especially as news becomes available about Kelly.

Thanks for reading and for commenting. Watch for more soon.

A Special Sam Day

School started this week for both Olivia and Sam. Liv jumped right into a full day of second grade on Thursday. Sam is in a new school this year, a Montessori school. To integrate new students into the early primary class, students were scheduled for successively longer days. On Tuesday Sam was in class from 8:20 -10 AM. Today, Friday, we picked Sam up at 11:45.

It is a real treat to spend time with the kids one at a time. On Tuesday we took Olivia out to breakfast after dropping Sam off. Today we took Sam to McDonalds for lunch. Mickey D's is one of Sam's favorite places. His mom and sister prefer not to go there so Sam was really delighted to go . He can be a rather healthy eater and today was no exception. He chowed down on his chicken nugget Happy Meal including apple slices and a vanilla milkshake. He also ate a good chunk of my burger and fries. He was one happy little boy.

To round out our special time together, Papa suggested we stop at the hardware store. We needed to have a key made; Sam viewed it as a field trip. First stop was to try out all the Cub Cadet lawn mower tractors on display in the center of the store. Then he and Papa walked the aisles admiring various "guy things". Eventually, Sam found a bottom shelf display of lock mechanisms for doors. He sat on the floor and worked the metal pieces back and forth, marvelling at the smooth movement of all those parts. He didn't really understand how the mechanism worked but, in his mind, it was a thing of beauty.

Have I mentioned yet that Sam is 100% boy? He has an inate ability to do all manner of boy things without ever being shown how. He immediately knew how to drive his battery operated jeep. He pretends to drive his dad's lawn mower, complete with pedal action and shifting motions. He is constantly striking kung-fu poses, jumping and rolling, and trying to dismantle anything with screws. The rougher the play the better, as far as Sam is concerned. He is agile and fearless, almost reckless at times. He is one of those boys who will someday be found driving his mom's car because she left the keys in it......and he will probably be no more than 10. It tires me out just to watch him.

I don't know how the conversation got started today, but Sam declared that his parents were girlfriends. I explained that girlfriends meant they both had to be girls and since his dad was definitely a boy, a better description for his parents would be that they were a couple. Sam innocently asked, "A couple of what?" Tom thought that was pretty funny. Guess he thinks like a guy too.

One of Sam's favorite "quiet time" things is to have me draw on his back. He cuddles up to me and says, "Do it again!" He rarely can figure anything out but he is always delighted to try. It is my secret way of getting in a few hugs with an unsuspecting cutie.

How can anyone resist that smile.

Hands and Hearts

I learned how to knit today using only my fingers and yarn. Olivia, who is seven, taught me. This wasn't my first attempt, but it was the first time I was successful at it. Liv had patiently taught her dad and Papa the simple steps, though their fingers were large and clumsy. I just couldn't get the hang of it. Today she declared that she would be holding a very special, one person class so that I could try again. I did it! I have no idea what earthly good a long, skinny length of loosely "knitted" yarn might be, but I know I can produce one if I need to.

Liv learned how to finger knit at camp this summer. She was introduced to the craft by some grandmotherly type who was there with her grandchild. Another kind soul showed her how to knit using knitting needles, but the finger variety was much more appealing to Olivia. Erin learned how to crochet at the same parent/child camp. She has been turning out scarves at an alarming rate. Guess what we are all getting for Christmas.

Earlier in the summer Liv attended another camp, at a private girl's school, where she was introduced to weaving. She was quite taken by that. In fact, she is requesting a loom for Christmas. Busy little hands.

Seems our little bohemian girl is quite taken by producing textiles. Perhaps this will be her niche in the art world. She comes by her love of hand crafted things honestly. Her Grandpa Ross is a skilled woodworker who produced a beautiful accoustic guitar for Dan last year. Her dad is always creating something in his shop from jousting lances to beautiful furniture pieces. Her mom is an accomplished tole painter and loves to make pottery. Her Papa is very skilled with a camera, and I like to dabble in all kinds of paper arts. Yes, Liv comes by her artistic bent quite naturally.

Kelly came to visit this afternoon. She had just gotten word about the passing of a friend who also had breast cancer. Though she tried to hide her sadness, it was obvious that she was feeling distress and probably a little vulnerability. When asked, Kelly explained to Liv about why she was so sad. Liv took it all in and then suddenly disappeared. She came back with a beautiful little card she had made on the spur of the moment with a simple message: "Kelly, it will be all right". It was just the right thing to say.


Kelly had brought along a project she was eager to complete. She asked Liv to help her. Another member of Kelly's on-line breast cancer group is hospitalized and very ill. Kelly was making a collage for Courtney to display as a reminder of her strength and the need to keep fighting. It was a pleasure to watch aunt and niece cut, paste and then adorn with loads of curlicues of sparkling glitter glue. Liv created her own poster for Courtney to help cheer her up. Flowers and colors and sparkles galore. Certainly Courtney will understand the love that is a part of these two great works of art. Little hands; big hands. And lots of heart.

It's Good To Be "Home".

Home. Well, at least to our temporary home away from home. None the less, it feels good to get back. Vacation is over and it is time to get back to the business of every day life. Our daily routine is much different here than it is in Sun City but this is where we are meant to be for now.

Our week at Cape Cod with the kids was fun. Every day was busy. Erin wanted to make sure we saw as much of the area as possible. We visited most every town in the area from Sandwich to the west, to Provincetown on the eastern tip of the Cape. We shopped and shelled, ate out a lot and enjoyed our little cottage on Swan Pond. The kids loved kayaking on the pond with their parents. They dug in the sand on our private beach, they swung in the rope hammock. Mostly, they got wet. Whether they were in swimsuits or not, if there was water at hand, they got wet. How great to be a kid at the beach.

Tom and I had a chance to go to a Beachboys concert while on vacation. Is there anybody who doesn't love Beachboys music? But, I've got to tell ya..... the 2 remaining, original Beachboys are OLD! The rest of the group was made up of young, talented musicians.....but they just weren't the Beachboys. They performed Beachboys music, but they weren't the Beachboys. When we saw a Tim Conway/Harvey Korman show a couple of years ago, I expected that they would have aged quite a bit since the days of the Carol Burnett show. But the Beachboys? Old?? I had a hard time getting past that. Maybe because I was celebrating my 61st birthday a few days after the concert. Maybe I am old, too. Bizarre! How could that be? Still......it happened to the Beachboys.

Kelly and Eric headed to New Hampshire for a wedding this weekend. I am so glad they made the effort to go. Today they are in Boston again. Kelly was scheduled to have an MRI at DFCI today. Yes, they do schedule appointments on weekends. Kelly wasn't real pleased to have to endure the procedure again, but I think she is pleased that DFCI is being so thorough, wanted films done and read by their own staff. That's not unreasonable. K&E will return tomorrow. We will talk to them soon.

Tomorrow is Labor Day. Wikipedia claims that the holiday originated in 1882 as the Central Labor Union (of New York City) sought to create "a day off for the working citizens". For most of us, Labor Day symbolically means the end of summer, though there are still 3 weeks of summer left on the calendar.

In New York State Labor Day also means the beginning of a new school year. Sam will be going to a new Montessori school on Tuesday. Liv will start second grade at Castleton Elementary School on Thursday. Dan will be away all week and Erin will be at work, so Mimi and Papa will be Sam's private transportation as well as getting Liv to and from the bus. By next week everything should be routine and we might actually have a little free time.

Originally, we had planned to come home that second week of September. Until we have an idea of when Kelly's surgery will take place we are reluctant to make any plans to head back to Georgia. As things come together we will review how we can help here and then make our decisions about returning to Georgia.

We are so grateful for the good friends we have made in our new community as they are looking after our house and keeping us up to date on local events. And we are grateful for old friends and family, too, who offer words of support and love.
It is always good to hear friendly voices, whether by phone or e-mail, imparting everyday news and keeping us a part of life at home. I do read all the comments posted here and always share them with Tom. I hope no one is offended that I don't respond directly. Just know how much your words are appreciated.

I am looking forward to Labor Day tomorrow. Then symbolic end of summer means that autumn is just around the corner. A new season; a fresh beginning. I think we are all ready to move ahead soon. Please keep my family in your prayers.

A Quick Note

Just a quick note from the Wayside Inn in Chatham, Mass. No, we aren't staying here, but we did have lunch at the Wild Goose Cafe, which is attached. On the way to the parking lot I spotted this computer station for guests.

It is good to be away on an actual vacation for a wee bit. Cape Cod is charming, full of historic homes, beautiful beaches and incredible weather. In fact, it is very September-ish today (those of you from up north know just what I mean). Tom and I are off on our own today as Erin, Dan and the kids were taking an educational cruise in Falmouth.....the opposite direction from us.

After this brief stop in Chatham for lunch, Tom and I will continue to meander until something else captures our attention. Always looking for that great photo-op, you know. I think the plan is to come back to Chatham tomorrow do the town in more detail and then celebrate my birthday with a nice dinner somewhere.

Must run for now. Don't worry about us. All is in a holding pattern with Kelly (though I have not spoken with her in a couple of days. We will make the best of this grand weather and will type up a report when we get back.

Thanks for keeping my family in your prayers.

A Little Excitement.

I hardly know where to start today. Our day started a little slowly (thank God for that) Things escalated from there.

First, Dan was expecting delivery of a large piece of heavy equipment for his shop, which is attached to the garage. Sam was beside himself knowing that a BIG truck was coming. He staked out his viewing area early, having his daddy set up a lawn chair right outside the garage door. When the truck was spotted on the road, Sam nearly knocked Tom down rushing to get out the door. Trucks and tools and all kinds of guy stuff are what Sam lives for. He is constantly striking kung fu poses and turning any L-shaped item into a "shooter". He lives for blood and guts and all that little boy stuff. Liv thinks it is disgusting.

Later in the day we were scheduled to take Sam to his new Montessori school to meet his teacher. I will be picking him up the first week, so Papa and I were tagging along so the teacher would be familiar with us. We were taking two cars so that Tom and I could "take the afternoon off" when the interview was over.

When we reached I-90, Erin braked for the turn. The back seat, where Sam's car seat was fastened, was not properly latched down and Sam, seat and all, pitched forward. Sam crashed into the back of the driver's seat, taking most of the impact on his left cheek, just below the eye. We pulled up behind Erin, expecting to turn left. Suddenly, she flew out of her car, and threw open the back door to get at Sam. She started screaming for us to get out and help. Sounds like just the kind of drama Sam is always fantasizing about. But it wasn't so cool in real life. Sam was screaming, Olivia was crying and Erin was in a panic. Erin wanted to call an ambulance, but I thought we could handle things. I jumped in the back of Erin's car and Tom took Liv to our car. We took off, flying. I called Dan at home and informed him of the accident. I asked him to call the pediatrician to advise whether we go to office or ER. Erin was driving like a mad woman and I was trying to calm them both down. Both of them are freaked out by the blood. I am thinking, "I hope we don't get stopped by a cop as I have no seat belt on and we are moving well above the speed limit.". Erin is muttering, "Where is a cop when you need one. We need an escort!" I tried to tell her that it looked worse than it was, but she was being a mother bear protecting her cub. Egads!

Ultimately, we went to the doctor's office. Sam suffered no serious harm though he will have a heck of a black eye tomorrow, as well as bruises on his forehead and chin No serious head injury, no xray, no MRI. He did manage to calm down as soon as he was offered a popsicle. Two, in fact; first "gween" and then "poe-pull". They should have offered one to Erin, too.

I have to tell you that when it was all over, just before we left the doctor's office, Sam asked to see Dr. Lemons again. Erin immediately questioned Sam about what else hurt, what was wrong, why did he need the doctor. Sam says, in a quiet little voice, "I want another popsicle". The little rascal. I am so glad that I had girls.

We are leaving for West Yarmouth on Cape Cod early tomorrow morning. Most everything is packed except for my stuff. Sigh. I am waiting for all the commotion to settle down before I put my things back into the suitcases they came out of. We will take two cars for the 4 hour drive. The kids will ride in the van (with the movies) and we will take all the overflow "stuff", as well as a kayak tied to the roof. We will be staying in a cottage so we have to take linens and toys and food and toys and bikes and toys and beach umbrellas and toys. You get the picture. You would think we were going to be gone much longer than one week.

We will not have internet service at the cottage. I will do my best to sneak away to a Starbucks with wi-fi, but I probably won't be posting too often. Let's hope this next week will offer a little relaxation. A little quiet time would be most welcome.

Thanks for all the words of support and friendship. You guys are the best!

Medical History

It is amazing how far the science of medicine has come in just a single generation. As we try to gather as much information about family medical history, I remark to myself how little detail we possess. Diagnoses and treatments were just fuzzy information. I am sure the doctors had very detailed information to work with, but the patient/family was not privy to most of those details. We didn't ask questions and the doctors never volunteered too much.

I think that the introduction of the World Wide Web and easy access to computers has made it possible for any patient or family member to become a well informed advocate for themselves when it comes to health care. We can't not ask questions and simply follow the doctor's orders anymore.

I know there are some of us who still prefer not to know too many details. "Just make me better, doc. I can't handle the details." I believe that we have a responsibility to be educated patients, not only for ourselves, but for our loved ones down the line. How I wish I could question my parents more completely about their family medical histories, probing the generalities and digging for more specific information. How I wish I didn't have to stumble and guess when I am asked to provide this type of information for my daughter's doctors.

What about my grandchildren? Are they more at risk because of the past medical conditions experienced by our family members? Would having more complete information allow the doctors of tomorrow to provide better care for them? Or maybe even help to predict the possibility of some medical condition?

Among my own siblings, I have to admit that I don't know an awful lot about their medical histories. Yes, some of the serious illnesses are known by all. Even then we often know of "stomach surgery" but we rarely know the exact diagnosis. What do we share about what we might consider "little things" or the more private issues? Especially when families are separated by many miles, we just don't often know what is going on, medically, with each other.

As we age, more and more medical issues arise. Some are trivial and some far more serious. Who wants each conversation to be what my friend, Jack, calls an Organ Recital where we go on and on about all our afflictions. Sometimes we just feel that our health is nobody else's business.

And then we find ourselves at a place where a loved one needs details to help her doctors try to calculate the possibilities of this or that. That is when I find myself wishing there were a big spreadsheet out there where family health matters could be recorded and accessed by others as the need to know arose. Am I asking for for a modern day version of what was once scribed into the family bible? Perhaps I am. But the science of medicine continues to grow in leaps and bounds. We don't know what factors happening today will be of great importance tomorrow. It all seems mind boggling and, frankly, a whole lot of trouble to keep track of all these facts.

It might be your daughter who could next benefit from a detailed family history. Don't wait until you need that information for her. Take the time to chronicle your family history now. If you are still lucky enough to have your parents in your life then I urge you to query them while they are still able to tell you what they know, or at least point you to another family member who may have more clues. It could be really important to someone, sometime.

Start today.

One Step At A Time.

I don't have much news to report tonight, as expected. But things are moving forward. Slowly, but forward. One step at a time.

Kelly and Eric had to wait about 2 hours beyond the scheduled appointment time before they got to see the surgeon at Dana Farber in Boston. I had a brief conversation with Kelly from her car right after the appointment. Basically, Kelly said that she felt that she had no new information to share. Well, we kind of expected that.

What I was pleased to hear is that Kelly liked the surgeon, a woman with a holistic approach to caring for her patients. And I was pleased to hear that Kelly felt comfortable, well taken care of and feels that she made her concerns understood. She was advised that all of the reports, scans, films and slides that she had taken with her would be reviewed thoroughly. It is possible that more tests will be required by DFCI, including repeating some that have already been done, if the experts there feel the need. That isn't unreasonable. The breast surgeon (I wish I had a name) will confer with the plastic surgeon about Kelly's case, and advise her of Kelly's willingness to be available on short notice if a cancellation would allow her appointment to be moved up. This will carry a lot more weight coming from the breast surgeon than it will from Kelly. If someone could just give Kelly a time frame to work with, she would feel a lot better. She should hear more from the breast surgeon in the next couple of weeks, after all has been reviewed.

School is still an issue. Kelly has not yet made a decision whether to postpone her studies for a year or to try to work her way through it. I think she knows what would be best, but she is not willing to make that decision yet. It is her decision to make so I must not interfere.

Kelly and Eric will be staying with Eric's mom, Polly, in Boston tonight. I am sure Polly will feel better having some face time with the two of them. They will drive home in the morning so that Eric can get back to work. I will talk to Kelly again tomorrow.

My cold is fading and I am feeling a little perkier. Dealing with emotional stress is a bit easier when your physical health is intact. I will try to get some extra rest and keep moving forward.

Thanks for listening.

Mentally Pacing.

It was cold and drizzly this morning. Cold for me, anyway. The temp was about 65. I am used to the hot, humid weather of middle Georgia. I probably look odd in my sweatshirt, but who cares. The sun eventually came out and the day was pleasantly fresh.

Today we had to take the little ones to the pediatrician for their annual physicals. Both passed with flying colors. Good health is not to be taken for granted. Not anymore. Good health is something to celebrate, and celebrate we did, with lunch at Peaches. Kelly joined us so we had a little pary of 5.

After lunch I took the kids home. Tom and Kelly started the rounds of gathering up all of Kelly's medical records, scans, films and slides. Tomorrow Kelly and Eric will be driving to Boston for a 5 PM appointment with a respected breast surgeon. All of this is news that I have reported before; facts that are already in evidence. It is not the facts that make me nervous, but rather the implications of what is to come.

Will this doctor be the right one? Will she and Kelly click? Will she be in agreement with the Albany doctors' assessments? Will she offer something new? Will she want/be able to convince the plastic surgeon (that Kelly is scheduled to see on Sept 16) to move the appointment up. Will this be the place that can rid my daughter of this insidious disease and make her whole again?

The list of questions goes on and on. I feel as if I am pacing, pacing, pacing. Mentally pacing. I can just imagine the level of anxiety that Kelly is feeling.

And so we continue to wait for answers. We know that surgery is inevitable. It is all the rest that we don't know, and probably won't know tomorrow. I pray that the visit goes well and that Kelly comes away with a few anwers to help her start to feel some control soon. My impatience is showing again. Things will all come clear when the time is right. I pray for patience. The sun is sure to come out eventually.

Ramping Up.

Kelly was successful in obtaining an appointment with the Boston surgeon her friend, Arup, put her in touch with. That appointment will be at 5 PM on Wednesday. This is just the general surgeon, the one to perform the mastectomy (or mastectomies) if Kelly decides to go in this direction. Many thanks to Arup for pulling strings on Kelly's behalf.

In preparation for this appointment Kelly needs to gather up all the original scans and reports to date. That means that tomorrow will be a busy day as she will need to visit about 4 different locations around the city to get everything. Not much notice for the medical records departments, but it can be done. Let's hope it all goes smoothly. It is much better for the new doctor to draw her own conclusions from the films than to accept someone else's interpretation. I am not certain if Kelly will be taking original microscope slides with her this trip, or if that is something to be addressed later. We are all excited that networking allowed this consultation to happen so quickly. If Kelly is really lucky, this surgeon may be able to influence the plastic surgeon to move her up on the schedule. Everything has been ramped up a notch.

Both kids are scheduled for their annual physicals tomorrow. I promised them lunch at Peaches, their favorite restaurant in Stuyvesant Plaza, near the Pediatrician's office. Kelly will join us for lunch and then Tom will drive her on the necessary rounds and I will take the munchkins home. This seems like a pretty efficient way to cover all the bases. Plus, we all get to have lunch together. Being a mom means that I am keeping pretty close tabs on Kelly right now. Lunch together is way better than a phone call.

My cold is in full bloom now so I have been moving pretty slowly today. Tom has been a huge help, lugging laundry, running multiple loads, while I focused on folding and entertaining the kids. We are all pretty pooped tonight. Erin is bathing the kids now. I think we will all turn in early tonight with the promise of a busy day tomorrow.

I have been introduced to Kava Kava, a natural calming agent. Seems like it is working as I am more in control of my emotions the past few days. Either that or the fact that I have been looking after Liv and Sam so there is no time to dwell on the sad stuff. Whatever it is, I am grateful.

Thanks again to all who have left messages for me. I have not been very good at answering everybody yet, but do know I appreciate all the kind words of support. I am really hoping that everyone who is interested in our journey is able to keep up by reading this blog. Feel free to pass both links (my blog and Kelly's Journal on CaringBridge (see link at top left) if you know I have missed anyone.

A Beautiful Day

Today has been a beautiful day. Blue skies with white puffy clouds, a little breeze and temps in the low 80s. Much more summerish than earlier this week. We are approaching my favorite time of year in the Great NorthEast.

As the beautiful days of late summer inevitably lead to cooler nights, falling leaves and the shortened days of autumn, which can quickly turn to winter, I find myself wanting to make the most of every day, despite the long dark days to come as we anticipate Kelly's surgery and recovery. Autumn will officially begin in about 3 weeks. It often seems to be the shortest of all the seasons up here. Upon reflection, the winter, that will come too soon, is really most appropriate, if I think about Kelly having to be housebound and limited in her activities, devoting most of her energy to cocooning and gaining back strength and healing.

I have tried to pass along to Kelly that today, this uncertain time, is still the best time to make the most of every day. I understand her drive to become an educated patient so that she can make educated decisions. For today, though, I wish her the ability to just let it go and enjoy the sun and blue skies. Such a noble philosophy. There aren't many of us who can rise above the worry that the unknown can bring, especially when the unknown is creeping closer ever day. Still, today was a beautiful day.

In fact, Sam, Tom and I met Kelly and Eric at Cracker Barrel for lunch. Liv and Erin stayed home to harvest tomatoes from the garden and make homemade sauce. Dan is still in San Diego. Having Sam alone was a delight. And it was sweet to see Kelly and Eric forget their troubles for a moment as they entertained Sam, asking silly questions, challenging him to that impossible golf tee game that Cracker Barrel has on every table. Papa and Eric stole some of Sam's mac 'n' cheese, but paid him back in french fries. For a short time it was all so normal.

After lunch, Tom had to go pick up mulch for the garden so Sam and I went off to the grocery store together. We were really lucky to get the only big blue car shopping cart at the store. Honest, it steered like a truck! Sam didn't mind. He is really into crashing these days. I had my list, and Sam had his. He told me that he knew where the strawberries were and that one package would not do. We must have two packages because he looooooves strawberries. Me, too. Especially the big juicy ones from California. Into the cart they went. Sam knows the Price Chopper better than I do so he was a lot of help. When I couldn't find something, he advised that I look for the store people to help me. That is a pretty simple outlook and I should pay more attention to that. Ask for help rather than wasting time and energy. Makes sense.

Erin, Tom and Peter, the teen boy across the street, spent the afternoon spreading mulch in Erin's many, beautiful gardens. I had the easy job of looking after the kids. In reality, they looked after me.

I am fighting a nasty cold and feeling "yucky". But those little grands of mine took good care of me. As I lay down on the floor of the family room, Sam covered me with a blanket and Liv put pillows under my feet and laid all her stuffed animal friends around my face and neck. I read them a little story. After that they each took a turn telling me a made up story. Sam's was all about crashes and bullets and blood, of course. He's 4. Liv is an excellent story teller. She has a great vocabulary, uses lots of inflection and has a wonderful imagination. I really enjoyed their tall tales.

Later, we went upstairs so that Liv could give me a pedicure. She filed and massaged and even applied clear nail polish. Sam watched TV but stayed close by. It was so sweet.

Dinner is over, the dishes done and the kids are bathed. Everyone is tuckered out and ready for a quiet evening. It was a beautiful day.

The Comfort of Family and Friends.

I didn't sleep again last night. I just can't seem to turn my head off, no matter how tired I am. I just keep watching the numbers turn on the clock. I finally dozed off about 6 AM and got a couple of hours sleep.

In the morning, Erin insisted on giving me a massage to try to reduce my muscle tension. Though it was effective, the entire hour could be likened to Elder Abuse. I had no idea how tight I was. I felt better almost immediately. Good thing, as these two little munchkins are pretty sad if I send them away and won't play with them.

I have to tell you about my custom made lunch today. Sam absolutely needed a nap this afternoon. He absolutely refused to go to bed without his mother sitting with him till he fell asleep. I stepped in, sitting quietly in his room as he threw a tantrum, but I would not let him out of his bed. It took a while. As he finally started to drift off to sleep, the door to his room opened a crack. Liv was on the other side and she was delivering a sandwich that she had made for me, all by herself. She slid the plate across the floor and I tiptoed over to get it, grateful for a bite of lunch as my stomach was complaining that breakfast had been hours ago.

You would have loved the creation. She had made a 3 tier turkey sandwich with mayo on rye bread. Then, to dress it up, she had put a big dollop of chocolate syrup on the top layer of bread. She further dressed the plate with squiggles of chocolate sauce (a la the finer restaurant presentations), and scattered dry roasted peanuts over everything. You know that I had to give it a try. It was......um.....interesting. It was such a heartfelt effort to cheer me up.

Once Sam was asleep and I was able to leave his room, Liv led me to her mom's room across the hall. Erin and Liv had planned a pedicure session for me. Liv had spread a big white towel on the floor and had gathered up everything loose in the bathroom she could find. She arranged all that paraphenalia (such as combs, toothbrush, nail clippers, Q-tip and whatever, to spell "Mimi's Spa". She underlined it all with lengths of toilet paper. She led me to the stool before the foot bath and proceeded to do a commercial about all the product she would use, including her phone number where I could call to order my own supply. How cute is that? God love her; she is such a caregiver and really empathetic. She created a total distraction from all the serious business of the past week, and all by herself. Sadly, we had to postpone the pedicure until tomorrow. I am looking forward to it.

Kelly had some good luck today,, too. I mentioned her classmate who is an anesthesiologist in a previous post. He had offered to reach out to the Boston people he previously worked with and he wasted no time, even though it is the weekend and he is on vacation.

This morning, Kelly received an e-mail from a breast surgeon in Boston (not sure which hospital) who offered to see Kelly this week. Kelly is to call the office on Monday to book an appointment for Wednesday. In addition, this particular surgeon copied the plastic surgeon Kelly is supposed to see next month. The hope is that the plastics appointment can be moved up. The two docs work closely together, so we all are praying that they take a special interest in Kelly's case and move things along quickly. Nothing is definite yet, but spirits are lifted. That is a good thing, much needed at this point.

Tom spent a good part of the day helping Eric install a new over-the-range microwave. I think that diversion was good for Eric, who has been solidly immersed in tracking down physician profiles, sorting out insurance coverage and seeking appointments on Kelly's behalf for the past few days. It is always good to complete a chore that has been on your to-do list for a while.

Another highlight of K & E's day was a visit from a high school friend of Kelly's, along with his wife, who currently live in New Zealand. Kelly and Eric went to their wedding in Mexico last year, but haven't seen them since, so they were delighted that Jason and Wendy could slip away from their families for a few hours. I am glad they had that time together today.

We all recognize the power of loving comfort offered by family and friends and we feel blessed. Thanks to all of you who read this blog who offer words of support and keep us in your prayers. It truly helps.

Ups and Downs.

Today is Friday. It has been a week of ups and downs. There have been moments that seem perfectly normal and there have been moments that make me wonder how I wandered into this foreign place full of technical jargon, where all I can say is, "Why?". How can all this discussion, reading, and research seem so impersonal when it is very personal, indeed? How did we get here? How do I get my daughter out of this place? Why can't I protect her? I am willing to trade anything to save her the pain and trauma she is surely facing. But there is no bargain to be made. Whatever the future brings for her, I can only be there to comfort and support.
It isn't supposed to be like this; I never planned for anything like this. I am not a person who gives up control very easily; it makes me angry. No, it makes me sad. Sad that no amount of determination on my part can change what Kelly must go through. I am working on my control issues. I have no choice.

Eric spent a lot of time these past few days checking on insurance coverage and checking out some plastic surgeons at both Memorial Sloan Kettering in NYC and Dana Farber Cancer Institute in Boston. MSK isn't a good match with their insurance, but DFCI seems to be. When Eric told Kelly that he was able to get her an appointment at DFCI, she was elated. When he told her it was not until September 16th, she fell apart. Waiting is the hardest thing to do. But she is on the books and she is also on the waiting list for cancellations. On Monday Kelly will ask her doctors in Albany to reach out and see if the appointment can be moved up. Boston is only 3 hours away and they are prepared to hit the road immediately if a cancellation comes up. Eric also secured an appointment with a plastic surgeon at Beth Israel Hospital, also in Boston. That appointment is for September 2nd. A little closer, but still so far in the future when every day seems like a week long.

Both of the Boston appointments are with plastic surgeons that were suggested by the Albany doctors. In addition, Kelly has a classmate, a physician at Albany Medical Center, who did his training at Dana Farber. He will do what he can to ease the way through the maze of scheduling and appointments. He has also suggested a few names that K & E will research in their quest for just the right doctor with just the right skills and experience. I hope they make that perfect connection soon.

We are back at Erin and Dan's tonight. The girls live only about 15 minutes from each other so it is easy to get back and forth. Dan is heading for San Diego for business tomorrow. Erin will go back to work on Monday. Olivia and Sam will get to spend a lot of time with Mimi and Papa this week. Our schedule is filling up with appointments for the kids' school physicals, school shopping and a visit to Sam's new pre-school. Oh, and we must prepare for our family vacation to Cape Cod as we leave a week from tomorrow. I suspect the days will move a little faster this week.

It's late. I'm tired and I feel drained. Morning comes early when there are grandkids involved. I know their smiling faces and boundless energy will give me a real boost. Hugs from little arms are the most precious medicine in good times and in bad. Hooray for hugs.

Decisions, decisions.

It is early. The sun is not quite up yet though I am starting to see the lake. (Have I mentioned that Kelly and Eric live on a little lake?) The water seems calm this morning, like it has had a good night's rest. I wish I could say the same.

Yesterday brought more information into the data pool. Kelly saw another plastic surgeon whose plan for reconstruction was completely the opposite of plastic surgeon number one.

Plastic Surgeon #1 would use implants with flaps of skin, fat and muscle from the back. Plastic Surgeon #2 would probably use no implants and would take skin, muscle and fat from the abdomen, performing a pedicaled flap (just means the blood supply from the belly remains connected even after the tissue is moved to the chest....you don't really want the details). But #2 said that Kelly should be a good candidate for a 3rd type of procedure which is only newly available to the Albany area.

This alternative procedure would involve reconstruction using belly skin and fat but leave the abdominal muscles intact. It would involve microvascular surgery to connect blood vessels from the relocated tissue to the chest wall. This procedure is the latest technology and is called a DIEP free flap. For a young woman, like Kelly, who wants to remain physically active (ready cycling and kayaking), the preservation of those abdominal muscles can be critical.

There is a down side. To consider this surgery Kelly will want to go where the physicians are more experienced than the new Albany group. The most likely places are either Dana Farber in Boston or Memorial Sloan Kettering in NYC. It is a major surgery and will require a 10-14 day stay in the area both as an in patient and as an outpatient until she would be able to travel back home. And there would probably be two post surgical trips. Hopefully most follow up could be done in Albany.

I believe this is the surgery that Kelly really wants but she keeps putting obstacles in her own way. She has a strong faith in her general surgeon in Albany but if she were to elect the "out of town" procedure, she would need to start over with another team in order to have immediate reconstruction after the mastectomy. That, plus the fact that it would be "inconvenient and expensive" for Eric to be there, put Kelly over the edge last night.

Why is the notion of needing to accept help from others such a hard thing to do? As I summarize the drama here, it makes it all seem like a no-brainer. Get the best possible treatment available if your insurance will allow it! In fact, Eric has family in Boston who would be willing to put them up for whatever time is necessary. Eric confirmed that last night. Objection overcome.

Kelly has a connection with a physician, a genetic researcher in breast cancer, who is connected to Sloan Kettering (she used to babysit for his kids). A mutual friend has already reached out to Dr. Jeff and told him that Kelly may need someone to guide her through the system and advocate for her, advising about "who is the best" in what she needs. Yes, NYC may mean some hotel bills, but having someone you know looking out for you when you are in a strange place carries a lot of weight with me. Kelly will try to reach Dr. Jeff for his input. That seems to go a long way to answering that objection.

Eric will call Dana Farber in Boston today to see if they can get an appointment for a consult ASAP. And he will dig deeper into the insurance details to see if there are any restrictions that would rule out an out of state procedure. Surely one of the two major cancer centers in question will be available.

K & E will consult with Dr. K, the primary surgeon here, to see if she has any specific recommendations for surgeons in either/both places. Medical records must be gathered too. All of this can be done and it is time to at least secure one, if not two more opinions on what is the best possible alternative for Kelly. It is not as easy as buying a new pair of shoes, but it is worth the trouble to find what you want and not settle for something that will do.

The sun is beginning to rise; the lake shrouded in fog. As the fog slowly lifts I pray that the fog of these many hard choices soon clears and Kelly finds the right path.

Rain Forest Days

The weather here in NY has been a little fickle today. One minute the sun is shining brightly. The next minute the skies open up and the rains pour down. This has happened half a dozen times today. It is like living in a rain forest.

I feel like a rain forest myself some days. Sunny and joking one minute, teary and down the next. On top of that I have been experiencing tension headaches that make me feel like my head is in a vice. I am an action person. If there is a problem then there must be something I can do, even if I can't fix it. Feeling helpless makes me feel lost and useless. Keeping busy is always a good thing. We have been busy today, so my personal rain has been kept in check.

Information continues to come in from various sources regarding Kelly's health. Her radiologist weighed in yesterday regarding this new turn of events. If you have already read Kelly's blog at www.caringbridge.org then you can skip ahead. Kelly is much better at explaining the details than I am.

As I understand it, basically the radiologist says that he does not believe this is a recurrence of the breast cancer. Rather, he believes that this newly seen area is actually more of the original cancer that just hadn't developed enough to show up on previous scans, thus was not excised nor treated with radiation. Had they seen multiple suspicious areas earlier on, they would have recommended a mastectomy right away. DCIS is so hard to visualize that this new finding doesn't really come as a surprise to those who know the nature of the disease. I can grasp this, and I welcome this news much more than to think a new cancer has reared its ugly head.

None of this diminishes the gravity of what Kelly is facing. I have been doing my reading in order to better understand all the terminology and options. Tomorrow she will see another plastic surgeon to see what she will recommend. No surgery will be scheduled until all the data is in and Kelly and Eric decide what direction they will go in. It is a heavy load for them. I am so glad that Kelly also has the support of an on-line group of young women with breast cancer. They can offer real life, first hand experiences and that is more than you will get from any doctor

Tom is so supportive, but just can't handle medical talk. He gets squeemish and has to change the subject or leave the room. That's okay. While I am immersed in research or dealing with Kelly, he quietly fills in by maintaining the routine. He can administer meds, handle the phone, monitor schedules and even do the laundry. Just don't talk to him about procedures, incisions, or body parts. Sometimes he has his own rain forest days and I love him for that. He is my rock.

I do appreciate the notes and comments that you leave here and the e-mails you send. Being able to keep you up to date using this blog is much less demanding than to be spending precious time at the keyboard trying to keep up with correspondence.

Thanks for listening.

The Back Story

Let me see if I can pen a short version of the story up till now. Remember, this is just from my point of view.

Last fall Kelly was diagnosed with DCIS, Ductal Carcinoma In Situ, an early form of breast cancer. Her treatment consisted of a lumpectomy and radiation treatments. At about the same time Kelly was diagnosed, she was also starting an intensive, two year EMBA program(a masters degree program designed for exectives in business). A lofty goal, indeed.

She completed her treatments in February of this year. We all gave a big sigh of relief. It was a long, tough haul, but it seemed the worst was past. The people at work were exceptional, allowing Kelly and Eric, both, all the latitude they needed to get Kelly healthy again. Co-workers set up a system to provide pre-made meals several times a week. Everyone was eager to offer their support.

School suffered a bit though. There were classes that couldn't be completed, papers that were undone. It required more energy than Kelly was able to summon at the same time she was going through all the medical stuff. Despite Kelly's high level of committment and desire, she just couldn't perform at the top level she usually demands of herself.

After much discussion, Kelly and Eric decided, together, that a personal leave of absence from work would allow Kelly the time to concentrate on school and give her time to heal. That 12 month period began July 1st.

Within weeks Kelly was scheduled for a followup scan, hoping for a report of N.E.D - no evidence of disease. She knew that there was always a chance the breast cancer could return, but she was feeling better than she had in a long time and ready to tackle the several papers she needed to produce for her school over the summer.

I know Kelly can be more exact with details than I, but you can get the picture.
A shadowy area on the scan, near the same area as the original problem, indicated the need for further testing. The MRI guided biopsy was a grueling ordeal, fraught with tension and emotion. I don't think that knowing this was all within the realm of possibility for a post lumpectomy person with breast cancer was much comfort for anyone. The Possibility was happening way sooner than anyone expected. Let's be honest and admit we hoped for Never.

And so the next chapter begins.

Why a blog?

Blogging. Something I never felt a need to do until now.

Why now? I need a way to share information with a minimum of effort on my part. I want my friends and family to be kept "in the loop"; to give you a place to go for the latest news, and a place for you to leave a message for me. It is my way of keeping you all close. It is my way of sharing my emotions and reactions, especially during this rough patch.

My focus is strongly on my daughter, Kelly, as she is forced to go a second round fighting the beast of Breast Cancer. Kelly has her own blog on CaringBridge.org but I wanted to share my point of view as a caregiver and supporter, doing what I can whether nearby (in Albany) or from afar (back home in Georgia).

I hope to use this blog to keep you up to date on how we are all dealing with this unfortunate turn of events. Feel free to leave comments or to ask questions if I have not made things clear enough.

This is my first attempt at blogging, so be patient with me. Spend as much or as little time as you wish traveling the long road ahead with us.

Be healthy.
Barbara