Crohn's Disease in my baby. : (

First of all, there are some new ACC sisters out there, proving this cancer, like all others, doesn't sleep. If you are a new reader, PLEASE read this blog in reverse, as most of the information related to my experience with Adenoid Cystic Carcinoma of the Breast is in the first 1/2 of the blog.

Secondly, since I am on what I call a 6 month reprieve of cancer worry (I pretty much only worry the month before my tests) I don't have much to say about this cancer business that I hope is part of my past ONLY. But I do have some things I want to document concerning the child who wishes not to be named since his buddies have found my posts in the past...so, for my informed readers, just know we are talking about ANDREW, my twenty year old, usually healthy as a horse college athlete.

Well, our world sort of changed just prior to Thanksgiving when he emailed me from college to say his belly hurt and he was having some diarrhea issues--it had been going on for about a month. Because of Johnny's death, I automatically think CANCER but really didn't think it would be possible but wanted it checked out so I made him a doctor's appointment for when we got back from our cabin in the Upper Peninsula. Over Thanksgiving, I kept an eye on Rew and noticed he spent a lot of time in the bathroom after we ate. He also mentioned off and on about how he could feel food move by in his belly in a particular spot on the left side of his lower belly.

Monday's doctor appointment brought a diagnosis of some sort of upset stomach, but also blood in his fecal occult test. THAT FREAKED ME OUT. So I insisted on a referral to a GI. The very next night, Tuesday, we were in the emergency room where they did a CT scan and said Rew had a severely inflamed colon, and could have ulcerative colitis. They gave us some meds and said make sure you follow up with the GI. Then Saturday of that week, Rew was again in the ER with crazy bad dehydration and got 5 bags of fluid, much to the MD's surprise. Ok, so finally, the colonoscopy was this past Thursday and sure enough, they found little ulcers throughout his colon, prompting the diagnosis of Crohn's Disease. I learned that Crohn's is little punches of ulcers in various spots, where ulcerative colitis looks like someone took sandpaper and scraped the lining of your intestines. I feel guilty for being relieved it was Crohn's--no parent wants their child to have this disease--but I had horrible fears that Andrew would be one of those terrible stories of someone diagnosed so young with colon cancer. Thank heavens that is not the case.

He is doing much better already, but still has spots that hurt. We don't see the doctor again until January and his goal when he left us was remission, so that is what we are working on. Rew is trying to follow the recommended diet (avoid fresh fruits and veggies) and is taking his 9 pills a day to start healing. Lots of fluids, of course.

So now that we have answers, things are a bit calmer for now. One week left of school until vacation, which we all need. Looking forward to the holiday season and will continue to count our blessings.

Six month check up normal...we think.

Yes, me posting must mean that I had something to say about this darn cancer thing that always hangs out in my life..so far, nothing major to report. You know my drill...I get blood drawn, have a chest xray, see Dr. Ansari, he tells me blood work is normal, and will call if there are any issues with my chest xray. That was Thursday and still no call so I have decided I am ok in terms of the chest xray.

But alas, my blood work was not normal this time...my hemoglobin was 10.5 and should be no lower that 13. Not so ironically, I wondered about it before I went because last time I had my blood checked (when I attempted to give blood) it was at 12.5 and I was turned away. But both times had something in common...I was having my period (sorry non-female or squeamish readers) so that is what Dr. A says is "obviously" causing the low level. I asked what else it could be...he said "you have had a colonoscopy" so that might have been a concerned, and all the reading I have done says it can be related to cancer, but more likely the female thing. So I am now on 325 mg of iron (ferrous something). I have since learned my sis is on it too. I am not too concerned, and although I am guessing this is all in my head, I seem to feel a little better now that I have been on it for four days. Maybe not, but whatever.

So that is that. I will feel better if I get through tomorrow with no phone call...just in case it wasn't read until late Friday or something, and I haven't bought my new purse to celebrate another 6 months of NED...hate to tempt fate. ...blah blah blah.

Looking forward to a lot of things...no time to worry about cancer.

More later.................

Molly

A mom says goodbye

Johnny's mom wrote some thoughts to honor the memory of her first born. She is an amazing woman--no one like her---and you can see why in her words. Thanks to Johnny's cousin Annette for reading Ginger's thoughts and encouraging her to do it.

Yesterday, a lot of people said good-bye to Johnny.

Many of you told of the different memories you had, and of the different ways he touched your lives…as a great older brother, a good role model, a great cousin, a kind man, a good friend, an excellent teacher, a considerate co-worker, a caring coach, an important person in your life…one who will be missed.

Many of the attributes you mentioned about Johnny were aspects of a man’s character…his loyalty, patience, kindness, moral fiber, goodness, work ethic, sense of humor, strength, generosity, fortitude, his love and appreciation of life. You may have admired some of these qualities in Johnny. You may have said, “I like the fact that the ‘player of the game’ went to the boy who ran off the field as fast as he could, instead of the kid who hit the home run”; or appreciated how he listened when something was troubling you. You may have admired how he trudged up “Banjo Hill” because he loved hunting—and after all, sometimes the road is tough on your way to get the “big one”; or how he kept fishing when the motor quit in the back waters of Manistee Lake—“Not to worry—someone will find us.” You may have admired how he nurtured his sons, how he loved Pam, how he fought cancer.

Think of the thing you admired most about Johnny. Now, think of how you can incorporate that quality into your own life…to be a better husband, a better father, a better friend.

What a significant difference it would make in a community if we each did just one small thing a little better. That way, the goodness of Johnny will live on—and what a wonderful tribute to him that would be.

A Tribute to Johnny

So many people have asked for copies of Jim's tribute to his older brother Johnny who died this week at 44, after the most courageous battle with cancer I have ever witnessed. Jim wrote this in his head...and then dictated it to me. Although he changed a few words during the service, this is an attempt, from his heart, with all his heart, to pay homage to his big brother.

My Grandpa Brawley was a loving, generous and patient man. His acts of kindness will live on forever in this town. My Grandpa Freund was a Marine. His courage, his honor, and his loyalty could be seen every morning as he raised his American flag, and again in the evening when he lowered it, folded it, and placed it in its drawer—ready for the next day.

Coming from such strong tradition, it is no wonder our older brother Johnny turned out to be the greatest big brother anyone could ask for. His honor to do the right thing and his courage to be his own man were examples for us to follow. His patience and kindness allowed him to teach us every thing that his father had taught him, from tying a knot on a fishing line to wind direction in a tree stand. His teachings continued outside the family bond, reaching anyone who asked or who wanted to learn. He was a positive role model for all of us.

To use Johnny's words, he would be truly humbled by the turnout today. But he would not want us to be sad, he would want us to celebrate his life. And what a life! He started fishing on the Platte River at three years old. He fished the Gulf of Mexico, the Bahas of California, Lake Okechoibee in Florida. He stayed on deserted island in the middle of Lake Michigan and on islands in Lake Erie. He fished the Manistee River, all the way to East Lake. He fished the coast lines of Eagle Lake in Ontario. He spent weeks at Coho Bend Campground fishing for King Salmon in Lake Michigan. He did all these things before he was 17 years old.

The experiences that my father gave us and the lessons my mother taught us molded him into the loving husband and great father that he is today. His adventures were just beginning. He hunted the pheasants in the Dakotas, ducks in Manitoba, caribous in Quebec, bears in Saskachewan and Ontario, mule deer in Montana and white tails-- from the woods of Northern Michigan to the hills of Southern Ohio. He enjoyed these adventures with his family and friends. His favorite partners in his numerous adventures were his wife Pam, and his two sons, Quinn and Jake. On his bow, he placed a picture of them so whenever he went in the woods, they went with him.

We can see the love in Jake's eyes, especially for all the animals in the world, whether its a dog, raccoon or skunk, they will all find safety in Jake's arms. We see the courage in Quinn's chest that tells me he will be his own man and I know he will have the honor to always do what's right.. With the experiences and foundation that Johnny and Pam have given them, these two young boys will grow up to be fine young men.

I have come to believe that everything happens for a reason. And sometimes it might take awhile to figure out what God's plan is. But now I know why a cute blonde haired, blue eyed little girl from Union Street on the westside of town joined the Army. God needed to make her strong because He was going to need Johnny before she would be ready to let him go.

Why Johnny? we are all asking. I believe God had three messages.

The first is for the young people here today: Johnny wants you to have the courage and the honor to do the right thing. Johnny did not believe in underage drinking, or the use of tobacco or drugs. He is watching you now and hopes you have the courage to do the right thing and to help your friends do the same.

Secondly, for the parents here: Johnny showed love for all children, not just his. One time he told me that he thought it was awesome the way I treated each kid on my team and that I treated every kid like my own. And then he asked me, “What about the kids on the other team?” And I thought “well, what about those other kids? They are someone else's.” And then he said, “don't you think every kid deserves your knowledge and enthusiasm?” I want to challenge all the parents here today. in Johnny's honor, to try to make every child reach their potential.

Lastly, to the community who we saw in the Field of Dreams for Johnny's birthday bash: Look what we accomplished when we all worked together! My mom, who Jeff Johnson says could solve the war in Iraq if she just had ten minutes to think about it, was the most impressed, saying that this group was the best group of people she has ever worked with. This won't be the last time that someone in our community needs support and help. In Johnny's honor, we need be aware and be active. We will step it up.

We never knew a day without our brother and we never will. Because in the woods, and in the water, and in our hearts, he will live forever.

Heavy heart.

Hi everyone. Not much to say...its hot, I'm watching the calendar as my summer ticks away, and cancer still continues to play a major role in our lives. It is so heavy on our hearts that it is suffocating at times. I want to tell Jim that we just need to get out of here...we are planning a trip to Cedar Point with the cousins so that is something to look forward to. Cousin Matt is getting married in two weeks--yippee, something positive--and my laundry is almost caught up. But I still feel like I am in a funk.

Johnny continues his battle with determination and bravery. Pam is amazing...great attitude with two broken feet and all...and is just trying to cherish every second with her Toad. I am starting to watch you know who struggle (he who won't be named but I am married to him). I see that as my role...to keep it together so others can fall apart when needed. But I need to get out and get out of this funk! Ginger continues to be a rock and our friends are so helpful, strong, and resilient. I am not going to repeat all the information about the major birthday bash and benefit we had for Johnny, but lets just say that Niles, Michigan, despite its warts and blemishes, has some of the most compassionate and hard working, words-can't-describe people living here. The turnout was such a tribute to Johnny, and the entire Brawley family. As more than one person commented, it was the "Brawley Way"...giving to others. One man said to me "you shouldn't be amazed at any of this. Your family has done so much for others and this is our way to pay them back." This was not about me at all, but more about John and Ginger and their fish fries, Grandma's generosity YEARS ago, and all the time the guys have coached, and taught, etc. And, what makes this even better is there are MANY families like this in our little community. So proud to live here.

As always, I become more "involved" in researching MY cancer during the summer months, just because I have time. Still reading a lot about how slow growing it is, but also that almost EVERYONE has mets later in life. I am now three years out and continue to worry about that, but most days, I can shove it out of my mind.

Another friend Becki was just diagnosed with lymphoma and is battling the chemo poison. She is also blogging on Caring Bridge and is a joy to read. This is a woman with tons of energy so this is hard for her. She remains positive and upbeat and I admire her for that.

Again, heart and mind are heavy these days. That is why I visited here today. Hope it helps.

Molly

Weather is looking up!

Ah, the first day of my summer sleeping in at my own house. Wonderful. No cancer scans to think about for awhile but Johnny continues to be in my thoughts and prayers. Please keep him in yours as well.

Josh will be 18 on Wednesday. So hard to believe. Today he left for Cincinnati with Johnny's family as his cousin Quinn gets to be the batboy at the Reds vs Phillies game tomorrow night. He is suddenly so excited. Andrew can't go because he is taking a class starting tomorrow. One of Johnny's best friends is friends with someone in the Reds organization and arranged all this...a few of us are going to head to Wings, Etc to see if we can catch the game on their MLB package. Sure hope to see Quinners! : )

So pleased to see in the forecast that we are dry for awhile! Shade continues to be terrified of hard rain and storms and I am sick of everything being so damp and humid.

Need to make a list of the projects I want to get done this summer. I work very well from lists--gives me a feeling of accomplishment.

Molly

Mammo is all clear.

All clear! Dr. Engl said that he didn't know what was on the mammo is April but the images today are the same as all my previous images. I must admit, I do wonder if the pictures were as good as they were last time...I didn't think she squished the boob enough...but I have to trust that the doctor considered that...

So, I am breathing easier tonight. Ginger and I had a great lunch at Bob Evans (a tradition) and laughed a lot. Such a great lady she is...

Love to you all--

Another sister lost.

Shelley is a friend I met on a list serv...she too blogged about her cancer. Her life was similar to mine in that she loved her family, loved to camp, loved dogs, etc. She also had triple negative breast cancer, which is considered more aggressive. I think she lived just over two years after her diagnosis. She was 37. THIRTY SEVEN. We must find a cure.

My follow up mammo is in a week. Just starting to think about it. Wish I didn't have to.....

Sunny

What a beautiful weekend! I love living in Michigan. You don't appreciate weekends like this unless you do. : ) Have so many things I want to get done this weekend but here I am instead.

We had another successful graduation and the Class of 2010 is on to bigger and better things. Graduation always comes at the right time--seniors are so ready to be done with high school rules, bathroom passes, tardy bells, etc. Not so sure if they are ready for reality, but many are well on their way. The rest of the students are done this Friday, and I work two more weeks.

I am very proud of myself these days for my lack of worrying. I am sure I will start obsessing again but for now, despite this concern in my left breast, I am not thinking about my cancer. Cancer yes, but not my cancer.

Very blessed to have a great husband, two great kids who use decent (not perfect) judgment, and to live in a great country.

June is approaching

Changed my follow up appointment to a week earlier. June 17, another round of boob squishing. I have not been thinking about it at all, but then tonight I WAS thinking about it and am just not in the mood for any disruptions to my happy life. So that is that.

Stressful time for me right now. May is the best and worst month for high school principals. Kids graduate and kids DON'T graduate. So tough. Get me through Thursday and I can relax a little. We have our ceremony outdoors so weather is always tricky. Looks like rain for now, but I am still hopeful.

We have committed to June 18 for our trip the UP. Jim's entire immediate family is going. We are all about creating memories right now. Looking forward to laughing and just relaxing.

Not much else to say. Please pray for Johnny and all other cancer fighters!

A decent weekend?

Not so much cancer on the mind today. Sometimes you have to just not think about it. Glad the weekend brings sunshine. May have to do some antiquing for my new "guest" bedroom. Should also clean out Andrew's closet. He brought home a load of stuff this week...he is off to Louisville to see a friend and then returns to Goshen for his last week. He really needs to get a job that makes a lot of money.

Josh has a double header tomorrow. More baseball!

A fellow ACC sister

Tonight I was catching up with some ACC posts from a list serv and learned that Kelly, who was diagnosed with ACC/breast (at age 37) about a year ago, is now in hospice. Her ACC/breast has gone to her liver, and although they planned on surgery, it is now not possible. She has a 22 month old child.

I do not correspond with Kelly as I do a few other ACC sisters, but this is once again a reminder that this disease is insidious and can be relentless. I consider myself lucky so far. For a few moments, I sat stunned and staring at the computer. But now, after a few deep breaths, I am going to remind myself of my mantra "I am not going to die today" so I am not going to worry about this today either.

Molly

Bliss.

Dealing with cancer fears is such a roller coaster. There are moments of shear terror, and then something happens and you just want to climb into a moment of joyfulness that hits you at the weirdest times. Today, for example, Sister Sue and I were refurbishing a mirror and an antique dresser/nightstand in the driveway, and while we were waiting to do a second coat, we sat in the sun on our back patio. Pure bliss. In the back of my mind, I was thinking "ok, five weeks until I might face another battle with breast cancer" but in those 15 minutes or so that we sat there, petting my goofy Shady Paige and listening to the birds, it didn't matter. Honestly, it was so peaceful. Whoever said "take time and smell the roses" really had something.

My sister is incredible, if you haven't figured that out yet. Such a good person, and talented in so many things. We are so much alike but I definitely didn't get the home decorator talents. I have good ideas, but she knows how to get it all done in a weekend. And she can shop like no other! Such a fun time we had.

Andrew also surprised me this weekend. I got up to let the dog out at 1:30 AM and he had taken a bouquet of wildflowers and placed them in a large plastic McDonald's cup, with a sign in crayon that said "Happy Mother's Day (cards are a waste of money) Love, Andrew" Next to the cup was a package of SHAM WOW thingies that he saw on TV. God love him. And Joshie, sweet Joshie, called from the mall and asked Jim what he should get me, and although Jim said nothing, I still appreciate that Josh would even think of it. Such good boys I have.

And then there is my husband...there's nobody better that is for sure!

Embrace it people, embrace everything you have because there are no guarantees.

Molly

Follow up

My family doctor's office called today to follow up after he received the report of my mammogram. His nurse said she just wanted to make sure that I had my 6 week appointment scheduled. She sounded so hesitant that I panicked a bit. I am thinking I may go get a copy of the report. But, again, it is probably just good follow up--I hope!

Both boys have games today. Andrew is in Indy for the beginning (and likely the end for Goshen) of the MCC tournament. John and Ginger went down. I know Ginger needs to escape and I am glad baseball is there for her. I worry about her as she is trying to be strong for her kids and has to have the same heartache we all do...love that lady.

Joshie is at the high school playing Sturgis. I am just tired, physically and emotionally so I came home. He was dh'ing. Not the best mom at the moment but he will forgive me.

Molly

Just really hating cancer more than anything.

My chest x-ray was clear. Just wanted to post that quickly. Now to get through the next 6 weeks for the re-check.

Counting blessings tonight and loving my family. The fight is NOT over nor will it ever be.

Molly

Research into "probably benign"

One thing I learned in my bout (I almost wrote "first bout" but I am refusing to think there will be a second bout) with ACC /breast was that there are scores that radiologists give abnormal results on mammograms. In light of the note that Dr. E wrote Dr. Ansari with the words "probably benign" I decided to google those words and sure enough, that is how a Birad Score of 3 is described. What I also learned is that shorter intervals of re-imaging are recommended, and that greater than 90% of these issues are benign. That 10 percent is looming, but there was one article that said greater than 98% were benign on further testing. I prefer the second figure but

as you know with me, even 1 percent is too many so I don't care for any of it! But it is what it is.

Tonight, I worry about getting through tomorrow's fear of a call from Dr. A's office about my chest xray. He told me to call but I know I won't be able to bring myself to do it. I literally freeze about things like this. Ugh. I hate hate hate hate how cancer robs us of simple peace and calm!

Johnny also has his visit tomorrow. Prayers abound all over the world tonight for him!

Time to get myself together and get my mind off of the negatives.

M.

I'm back. Cancer had better NOT be.

It has been almost five months since my last post. I doubt anyone visits anymore, but I am now going to write again since things are a bit interesting with my last round of tests.

Yesterday was my yearly mammogram, which has hardly worried me since being diagnosed three years ago. But yesterday, a very very thorough radiologist found an area of density in my left breast--the one I used to call the "good boob"--on my mammogram. I had extra views, and ultrasound, more views, etc. He came in to talk to me, told me that if I was just any Sally Smith off the street he would be less concerned, but there WAS something showing up and he was too anal to let it go for someone with my history. So we did one MORE view--one he called a lateral roll--which he says he NEVER does--and it made him feel a lot better, BUT he still wants me to have another mammogram in 6 weeks. Yes, 6 weeks, not 6 months. Ok, that sort of freaks me out.

I keep repeating some things he said to calm myself down":

1) He's really anal. (gotta like that in a radiologist!)

2) He said "you got burned once...I am not letting that happen again." (he was referring to my mammogram that did NOT pick up the 6 cm cancerous tumor)

3) He was going to do an MRI, but said the last view (the lateral roll, that some techs call the "titty twister") made him feel a lot better. Something about tumors don't move or change shape and this picture made him think it more likely benign breast tissue.

4)There are no masses evident, its just the dense area that is different than my last mammos...you know the whole change thing is a bad thing on mammos. My note I was to give to Dr. Ansari said "probably benign area of density".

So there you have it. You know how I feel about that word "probably."

I was almost an hour late for my appointment with Dr. Ansari because of all the extra imaging. My blood work came back fine, and honestly, Dr. A did not seem too concerned with the mammogram. He just said that the radiologist is really really good. He seems to think I am doing fine, and even wanted to cancel the chest xray I have scheduled. (I think he picked up on my anxiety) Ginger of course said "oh no, we are having this done!" so I then had the chest x ray. No results yet--I am supposed to call Monday but as always, will be terrified to do so.

One of the first people I talked to about this was Johnny. We laughed about it because there is not much else you can do.

For some crazy reason, breast cancer does NOT scare me as much as it used to, and honestly, I am still more freaked out about the chest xray. I know breast cancer is beatable, but lung mets from ACC are most likely hard to beat. Sigh.

So I am back, hoping writing therapy will help. I am back to being anxious when the phone rings and back to googling "areas of density."

Cancer never leaves.