Friday, August 31, 2007

What else can go wrong?

I know you are all so anxious to know about the visit to Dr. Woody. (yeh, right! : ) What a day it was on Thursday. I cried for the second time since my diagnosis. I also said the F word I think six times. And now today I have more problems. Let me explain.

Dr. Woody sits me down and says the reason for this visit is to answer any last minute questions. I said great--I have a couple.

Q: How will you determine the size of the reduced breast and the implants?
A: The reduced breast is made as my current body tissue indicates. In other words, he wants a symmectrical "mound" but it all depends on how my tissue mounds itself. Then, he makes the implanted breast the same size. (I am not explaining this very well, but I understood what he said. He said, in general, it will be about the size of a C cup.)

Q: What if I have to have radiation?
A: Hopefully, we can get through the whole expander process before that would happen. If it has to be earlier, he can't finish with the implant surgery because you can't have plastic surgery until a year after radiation. (I did not know this. So, AGAIN, pray for clean margins!)

At this point, Woody decided to be funny and says "Ok, you said a couple questions. You are done." I did not think it was that funny and I am sure my eyes indicated so.

Q: Will the implant or tissue expander interfere with any type of diagnostic testing--including chest x-rays--as this is where my mets would likely be if they were to occur?
A. No interferences are likely, but with my mammos he thinks I will have MRI's anyway. There are alternative types of imaging that can avoid any reconstruction issues.

Last Q: I have this rash and you are the first doctor I have seen and I need you to look at it. (Woody looks at rash)
A: ooooHHH, I am not good with rashes. HaAve you switched detergents, poison ivy etc? Yada yada.

Woody then tells me that the surgery will NOT happen if the rash is still there. He said it would be like opening Pandora's box. So he recommends that I call my family doctor and have it assessed. I tell him I have a new doctor and that I may not be able to get in soon enough. But he assures me that if I explain the situation, any good family doctor would get me in. I say ok, I will call on my way home. I then ask him if he thought this rash might be my cancer coming to the skin--he said no, (with a little laugh) and not to freak out. But he again emphasized that it could be a strep infection, a staph infection--and it has to be gone or surgery will have to be delayed. He said try to see someone no later than Friday--which gives me a week to get it cleaned up.

I leave and think, damn, gotta get rid of this rash. So, on the way home I call Dr. Tackett's office and the receptionist answers in her cheerful voice. I tell her my plight in a very serious voice, as at this point, I am wanting this crap done with and am sick of it. She listens, "uh, huh, uh,huh, ok. Well, I don't think we have anything available today or tomorrow but I will check." So she puts me on hold. Thirty seconds later (or less) she gets back on and says very cheerfully "Nope, sorry, we don't have anything available."

I am stunned and don't know what to say. I do manage to sqeak out: "Ok. I will find something else" and I hang up.

And then the tears come. I was SOOOOOOOOOOOOOOOO frustrated at 1) her cheerfulness 2) she didn't even offer me an alternative and 3) I HAVE FLIPPIN' CANCER AND YOU CAN"T SQUEEZE ME IN??????

****just so you know, at this point in writing this blog I get the phone call from Tracee at Dr. Nancy's office. More explained below.

I called Jim who kept saying are you ok are you ok, and I am like Yes, I am fine I am just so ANGRY right now. I was trying to think of anyone who could assess this stupid rash--I thought of a parent I know who is a docter--I thought of ER, and finally decided I would go to the walk-in clinic when I got back to Niles. I am still so angry I cry the whole way home and look like crap. But I get in and the doctor there thinks it is eczema and I just need a major does of prescription strength cortisone. It doesn't look like eczema to me, but he tells me twice he thinks that is what it is. So I get the 'script and we go camping.

Some funny things happened camping but my plight is now worse so I won't take the time to try to be funny. This morning I get a call on my cell phone and it is Bronson wanting me to have some pre-op things done--a potassium test, and and EKG. I have to have this done for anethesia's sake. No biggy, we were coming home this afternoon for the game so I will just go to Lakeland and have it done.

So I do just that. And guess what? Dr. Nancy's office just called and my EKG was ABNORMAL!!!!!! frick, fruck, shizzle, crappola. Damn. Tracee, my favorite nurse in the world, tried to calm my fears by saying this has happened before to other patients and it doesn't mean anything horrible but Dr. Nancy (or somebody!) would like to see a previous EKG if possible. Luckily, I had one in October of 2006 (when I thought I was having a heart attack) so Tracee is now on the hunt for that for comparisons. If it proves to be something minor, then I will probably be able to do the surgery. But if it proves to be something, I have to have cardiac clearance, which means I have to see a cardiologist on Tuesday. She did tell me to try not to worry. So, there are two things that may keep me from getting rid of this cancer. In the meantime, those little cells continue to divide, mutiply, and add. I always did hate math!!!

WHY OH WHY OH WHY OH WHY does this have to be so difficult?

I'm done thinking about it for now. Going to the game tonight and then back to camping. I will try not to worry but we all know how that goes.

Going to call my cardiologist nurse sister and sister -in-law. And my mommy.

Thanks for all your prayers. I obviously need each of them.

Love to you all--


Wednesday, August 29, 2007

Magic Wands, 3D nipples, mad orthodontists

Still worried about the rash. Used Sheryl's Poison Ivy spray all day--it is cortisone and from the cream last night it does seem a bit more pale--but with my bra strap, it seemed to inflame it so guess what--I am "hanging low and free" if you know what I mean. Such a good feeling whether you have a rash or not. So, I am not going to obsess about this rash for now. Here I have cancer flowing through my mammary glands and I am not worried about that, but a rash the size of a large thumbprint scares me to death. It's all about the unknown. It is also about not seeing a doctor in about three weeks and getting back into worrying habits.

Work was nice today. And the comments I received yesterday were so uplifting! I needed them more than you know. Today, a nurse from Bronson called me just to see how I was doing...she works in the Women's Health Center and treated me when I had the lumpectomy. She read that I was coming back in and just wanted to see how I was and if I needed anything. I did tell her abut the rash and she said it is NOT likely to be anything but a rash, and that Woody, Plastic Surgeon extraordinaire, could take a look at it tomorrow. It was just nice of her to call.

Some members of the staff got me a "magic wand" today--I also got one from Michelle A., who brought it from Relay for Life. I figure I am extra blessed because I have two magical wands! I also learned that ANOTHER friend of mine might be fighting a recurrance--she was going to the onco. today. This cancer is just ridiculous and needs to be eradicated!!!!!! I am waving my wands like crazy.

Did you all check out the funny Save 2nd base website? I love it! Of course, I personally would be too embarrassed to wear the shirt, but would opt for the S2ndB shirt without the baseballs...but I laughed so hard when I saw it. If you haven't seen it look at the upper left corner for the link.

Hey! (I'm excited) I learned to use my Ipod nano! Granted, Josh has to download everything onto it, but I can find songs, my motivational stuff etc. I feel quite hip.

I think tomorrow I talk boob size with Woody. And I am assuming nipple tattoos--that's tah-hhooos to you Jenny F. For Kim's sake, let me explain the tattoo thing. When they reconstruct your breast, oftentimes they can't save the nipple as it may have cancer cells near it. So, you have this new breast mound (their word, not mine) that looks like, well a plain old mound. So, yes, the plastic surgeon then tattoos a new nipple on! What I don't know is how thay make the actual nipple part look 3D--the other part, called the areola, is just tattoo, but in picture I seem to think the nipple part looks 3D. Lordy. One lady I know had a pink BC ribbon tattooed in the nipple. I could have "Jim" or something, but then Robert would be offended. (JUST KIDDING! Jim is my boss, but my husband's name is Jim--just trying to laugh here) Who would have thought in February, when I woke up with pain all over my breast that it would lead to talks of tattoos and magic wands?

Completely forgot about Josh's orthodontist appointment today. Never have I done that before. I will not hestitate to use the sappy "I have breast cancer" story to get me out of a chastising from the orthodontist.

We are hungry. I have suggested ordering pizza. No clean up is my goal tonight. Jim concurs.

Happier night tonight than last night but it is early. I am going to check my rash out I must admit. Boob is still hanging in there. looking pathetic and ready to meet its demise.

Staying strong...


Tuesday, August 28, 2007

Googling at 3 A.M.

Today is hard to describe. I was somewhat emotional today--from the moment a colleague upset me--to meeting with a fabulous teacher who had a bad day--it was just strange. I also know I am so tired--woke up last night and started googling crazy things about breast cancer and rashes on shoulders at 2:30 a.m.--no wonder I just want to sleep! This rash on my shoulder/breast is scaring me--no one in their right mind would think it was breast cancer, but then again, I am not sure I am in my right mind. I probably have cancer in my right mind, right? ARGHHH. That is how I think. I did go with dear Jimmy and buy groceries for dinner, along with some cortisone cream. I sure hope this starts to clear up--just to ease the worry. It really isn't bothersome, itches a bit, but it scares me. (my buddy Jenny F. told me today that if it is another breast cancer, I might as well sail away to Bermuda and live the high life! Poor Jenny, she has to listen to me about all my hypocondria notions)

Back to work. I need work so bad. I know I am needed and helping others is what keeps me going. We have such a great teaching staff--everyone is so kind--and when the kids come back on Tuesday, I will even smile MORE. But trying to get everything to make everyone happy is tough. I so appreciate the positive attitudes from staff members who can find a reason to be positive about ANY situation and those who look for solutions, rather than just complain. Can you tell I love our staff? And Jenny Nate, if you are reading this you are THE BEST!!!!

I need to go school supply shopping for my kids. I will probably have to buy the $4.97 binders since we are so late and all the 97 cent binders are sold out. I figure between Josh and Andrew we will need at least 12 binders. Andrew's schedule is pretty tough this year--I hope he doesn't let this cancer thing distract him. So far, I think he is handling it well, but he doesn't talk about it much, while Josh is open about what he is thinking. (sorry teachers who have Josh, he never hesitates to share his opinion!) I am sad I don't get to watch Josh adjust to the high school--only for three days I guess I do--but I was so looking forward to a child who would actually, and likely, come up to me and say "Hey mom!"while the other child ( my darling and so affectionate (hrmmph)Andrew) would hide behind his binder and wave a tiny pinky finger as he walked by lest any one figure out I was his mother.

I want to go back to Maine to escape the looming September 7. I am hopeful that this rash will clear up by this weekend so I can enjoy camping without constantly running to the mirror to see if it is fading. Perhaps Woody, plastic surgeon, will ease my mind on Thursday.

Time to eat some tacos.

Hanging in there...I promise.


Monday, August 27, 2007

Cancer sucks even more.

Today was the first day back to work with all teachers and although it was a good day, it was a long day. The interesting thing was watching teachers sit through a day long lecture--if anything good comes out of it, teachers will at least realize the importance of keeping kids engaged. The topics were VERY good, but beginning of the year inservice is always hard for everyone, because lesson plans, room arrangement, WHO IS ON MY CLASS LIST, is foremost on teacher's minds. (also what prep and lunch hour they have--we are so much like the students.)

One sad thing I learned today is that a colleague of mine has had his cancer return in his jaw. He is facing his second bout with this sh*$%Y disease (sorry for the language but that is how I feel at the moment) and will have surgery on Sept. 11. I will have to give him this blog address so he can chat with us as we convalesce. We are both out for at least a month. He has been one of my inspirations through my diagnosis so it was a set back for me too-- to realize the reality of recurrence. His cancer is different than mine, but cancer is cancer and still sucks.

I made Jim look at internet pictures of breast reconstruction last night. That may seem wierd to you, but I, of course, have researched it and seen pictures at the plastic surgeon, but the internet has loads of pictures (just google 'breast reconstruction' "images" ) so I thought I would prepare him. As I have said a million times, Jim says he doesn't care what I look like, but I still want him to be prepared for scars and fake nipples. He looked at the photos and said "well, I don't care for that lady, but anything will look fine on you." Bless his little heart. (One interesting thing about these photos is that breast cancer survivors are normal looking--tan lines, moles, rolls of belly fat, etc. fill these pictures. Normally when you look at women and boobs you see perfection so it was nice to see bodies that look a lot like mine...ookay, a little better than mine but at this point WHO CARES!)

Today my worry is a splotch of yuckyness on my upper upper breast/shoulder area--yes, the bad breast. It really looks like a line of poison ivy, but for the life of me I don't know where it came from. At first I thought it was a bug bite, but it is a little bumpier than that, and spreads down in a line. Momentarily, I freaked it was inflammatory breast cancer on my lower shoulder--that is when Jim said YOU NEED TO STOP READING ALL THIS S*%&!--but everything scares me...obviously, if it is still there Thursday when I see the plastic surgeon I will ask him. I do go see my family physician FINALLY on 9/6. He is replacing Dr. Stanley who retired...and although I don't really need to see him for anything specific at this point, I thought I should make an appointment. I did so right after I got the big C word, but his receptionist certainly didn't think it was that important that I see him right away so I don't get in until next week. I am a bit put off by that and will share my concerns with him, but I still need someone to prescribe me my thyroid medicine and treat colds, etc. It just sort of made me mad that when I told her I was just diagnosed with cancer that she said "Well, he'll be getting all of your reports so the first I can get you in is..." Luckily, I never did use all the Xanax my first surgeon prescribed so I still have a drug stash if needed. : ) But he sure is getting a lot of reports on someone he has never met!

As I look at my insurance receipts my treatment for cancer so far is well over $10,000. Never, ever, ever, have I or will I complain about my insurance. And just think, the fun is just beginning.

Another big mental debate I have been having with myself is the results of my PET scans. As you know, I keep freaking about my neck, my salivary glands, my right ear pain, etc. So I asked on a breast cancer forum for adenoid cystic carcinoma (spoken with a Middle eastern accent) about PET scans and learned that they are basically useless without CT overlay, and even then, they are somewhat questionable but much more reliable. Well, I didn't think I had a CT overlay, which meant WORRY WORRY WORRY--but then someone suggested I read my PET SCAN (duh!) so I did and it was called a PET SCAN/CT, so then came RELIEF, RELIEF RELIEF. But then when I told my forum buddies that it WAS a PET/CT (hoorah!) from skull base to mid-thigh, one lady pointed out that skull base would not include the ear area. Thus, WORRY WORRY WORRY.

That is my roller coaster life.

But, one thing I keep trying to tell myself is although I can read, I do NOT have a medical degree and if I don't have faith in my doctors--that they have thought of all these things--I WILL GO CRAZY NUTSO.

Andrew slept with his football last night. God love him.

Love to you all...


Saturday, August 25, 2007

Life is sweet.

I missed my first day of blogging yesterday but for good reasons--LIFE! Worked all day, met with new teachers, finished some little scheduling things, and then went to the varsity game. The Vikes lost against the pre-season favorites to win the conference, but despite the score of 26-0, they looked much better than last year. I know how much work the coaches have put in and hopefully they will be paid back with a win vs. Sturgis. Although I have complained a bit about Andrew not being able to play yet, it was sort of a relief last night because 1)he couldn't get hurt standing there on the sidelines and 2)as quarterback, you are the target of many eyes and comments. I want to go back to Rocket Football! : )

Lonnie, it was so good to see you. Can't tell you how your support makes such a difference. I always have a sense of peace when we are done talking. And Vikki--thanks for laughing with me. Your experience is so valuable to me!

Today is normal laundry, cooking, cleaning, etc. That isn't so bad. Looking forward to camping next weekend. Hope this week's monsoons are indicative of a DRY weekend next weekend.

Stay strong.


Thursday, August 23, 2007

A normal day, for the most part.

Busy with life. Worked concession stand for football until a big ol' storm came through. (Jim says "my goodness, you have breast cancer. Doesn't that at least get you out of concession stand duty??) Came home in mild hurricane and am now in for the night.

I have joined a breast cancer support site on yahoo and get probably 50 emails a day from those of us fighting's a list serv so I see all the emails. I would say at least two people a day are "diagnosed today." Funny, I feel like a veteran in that area and try to tell them surviving the diagnosis is about 95 percent of the battle. I think about that day and get all choked up--it was worse than anything, even what I am facing now.

Missing Ginger--and John too--just miss the laughter. Although I have had quite a few laughs at work. My friend Jenny, who will KILL me for writing this, was describing a friend of hers who had to go through chemo. She is telling me how this woman coped with it and said "She had beautiful long dick hair"--what she meant to say was "dark" hair--so of course we laughed and about crashed the car. I hadn't laughed like that since Crazy Mil left.

I also learned today that Lori, a cousin, is now teaching with us in Niles! Congrats Lori--it was great to see your excitement!

And a shout out to Quinn--my nephew--who is in the hospital with dehydration. Thought it was appendix--but CT says no. He's just there for overnight and is getting lots of fluids. Goodness--poor thing. Love you Quinners.

That's about it. Can you believe it?

Love to you all. 14 days and counting.


Wednesday, August 22, 2007

My dog is stoned.

Interesting day today. I will start with the visit to the dentist. I go to Dr. Lisa Christy in Berrien Springs. If you are ever looking for a new dentist, I love the office, the people, and Dr. Lisa. (that is what she likes to be called) Everything is so shiny and modern and so not the dentist I have been used to. As you know, I tell everyone everything so when Judy, the hygienist says "anything new we need to know?" the story starts flowing! Oh my goodness, how nice was this lady. She took her time, told me about what they normally expect to see with salivary gland tumors, etc. She checked me out thoroughly, cleaned the teeth, and in comes Dr. Lisa. I think I befuddled her when I told her what I had--but she asked me all kinds of questions about pain, swelling, my saliva, etc and then checked me out. Of course I know that nothing is fool proof, by I consider today a success because she didn't see anything that alarmed her--she didn't say OH MY GOD THERE IS A TUMOR--but instead explained how a lot of cancers don't flow upward--they can--like lung going to the brain-- but what she explained made a lot of sense and just gave me a bit more piece of mind. I am going to start going every three months and wemight do some things differently if I have radiation, but for the most part, it is just to keep my teeth clean. So that was good.

Driving home though, I felt unusually tired and started worrying that my immune system is down, etc. Oh wow, woe is me, etc., etc. But then I remember the night from H E DOUBLE HOCKEY STICKS--which was last night. I slept maybe two hours--not because I have cancer and was up worrying all night--but because my dog, whom you all know I adore, is PSYCHO DOG when it comes to storms (and by storm I mean a little rain, with a small rumble of thunder and a few flashes of lightning) Ok, Shade, (that is Shady Paige Flamethrower Brawley to you Heather) since April, goes nutso when we get the slightest bit of a storm. This started in April and her behavior has gotten worse. While most dogs might go hide under a bed, Shade tries to hide under or behind anyone human. Try going to the bathroom during a storm. (yes, she crawls up behind the poor soul doing his bizness and tries to sit on the toilet seat) Try working on the computer (she tries to crawl onto the keyboard, into your lap) and worst of all, try sleeping!!!!! She gets on the bed, and basically lays on your head, paws scratching at anything she get get a hold skin and hair.


Ok, so anyway, this week after even John and Ginger, who have owned more dogs than any other living person, said her behavior "needed medication and has never been seen before on the face of the earth", I call the vet. They are very sympathetic and get me some tranquilizers. Ah-ha! So last night I get to try them. Directions say to give one pill, and then an hour later another one "if needed". So, at 2 a.m--rumble rumble flash flash-- Shade is clawing to get underneath my head in bed. I come downstairs to get the pill. Give her some bread with the pill--she swallows--and off we go to bed again. About 2:30 she goes to the end of the bed and sighs deeply so I think we are all set. Well, that would be too easy now wouldn't it? A few minutes later she is back sitting between Jim and my head. Just sitting there looking down at me, ears flopped forward, tongue panting like always. So I scratch her belly a bit, thankful she isn't clawing me to death. But being tired, I stop. Two seconds later I get a PAW-- gauging my eye ball out. I scream and scratch belly again. Get tired--stop scratching-- so I get the PAW. Ok, this isn't working. I look at the clock and it is now 3 A.M.

TIME FOR ANOTHER PILL SHADY!!!! Back downstairs, give her bread and a pill and go back upstairs. I sit up with her and slowly she lays down and falls asleep. She wakes up a few times but as long as I pet her ears so is ok. I fall asleep until Jim gets up at 5:30. Apparently, she fell asleep too but that alarm gets her up and because it is raining still, she nudges me with her head--looking completely STONED out of her mind--so I just get up. Poor thing can't even walk down the stairs without going sideways, and ran into a couple walls. But while I got ready at the sink, she did give me a few inches at my feet.

So here it is 5:00 PM and she had been out, she's eaten and drank, but still looks higher than a kite. AND I DID THIS TO HER! I feel so bad. But you know, as I type this, she is asleep on the couch, and the sky is sunny. Thank goodness.

I really think I need a nap. Love you all.


Tuesday, August 21, 2007

Yea! Kristina is here!

If you read the comments from the Lightning Bolt blog you will see that Kristina, who I have never met or talked to, has signed in! She too has "adenoid cystic carcinoma of the breast" (spoken in a Middle Eastern accent ala Dr. Ansari) and is now recovering! I can't tell you how her comment(s) have lifted my spirits...I know all of you will welcome her to our little world and Kristina, you have made my day! I feel for you because of the radiation. I may also have to have it but we will deal with that when it comes--but thank god you are on the road to recovery. My boob is still blue too--and that sentinel node incision is pretty red looking--but coming off in a week or two with the rest of this fat piece of flesh. : )

I just wanted to say thanks for posting Kristina! Everyone say hi to Kristina!



That is really all I have to say. Today is the day that I am sick of thinking about cancer, although it was a really good day. It is ironic to me that a cancer basically "stops everything" but life continues on.

I had to get the mop cut tonight. There was a small part of me that sort of hoped chemo would allow straight, blonde locks to grow back in but alas, the mop stays. I also go to the dentist tomorrow--I will tell her (since I tell everyone everything!) to check out those salivary glands for any lumps. I have read that dentists do often find cancer symptoms...I will tell her to dig deep into my throat. Ok, enough about that. When I start telling you about my bathroom habits it will be time to shut me up!

Tonight is Freshmen Orientation--I am not saying much as not being at school for a week has sort of made my brain mush...but I do have to speak. Usually, I like to embarrass kids I know in the audience but don't have it in me tonight. And I probably couldn't embarrass Josh anyway--like I did Andrew and Sam a few years back. Hard to believe he will be with me this year too!

Armpit --oops, I mean axillary region--still aches. The incision is a bit inflamed looking so I switched bras so it doesn't chafe. Chafe is another ugly word.

Cancer is just ugly. Bu tI do love all my little pink gifts.

Monday, August 20, 2007

Lightning bolts and great friends

Boob hurts today. It is healing, and little lightning bolts of pain keep striking near the incisions. It is rather strange.

Many of you know Robert, that crazy dude I work with. Today he sits at my desk and says "I'm looking for another job." And I say "WHY???" He says,
"Because if you are checking out, I am leaving." I told that crazy dude that I am NOT dying and not checking out--just another Mr. Sensitivity comment. I did have to laugh tho'...he is sooo not good with drama like death.

PK brought me a perfect book that I haven't started reading yet called "How to Live Between Office Visits". I swear to god that having this time away to just live is extremely scary. I figure if I am in the doctor's office I am not dead or dying, and if I was they would save me, but since I don't see the doctor for three weeks--egads...just think what could go wrong! That is why the book will be perfect. Pk, i admire your knowledge and appreciate all that you have done.

It was great to see co-workers and I luckily ran into Susan, a breast cancer survivor. When she was diagnosed long before I was I admired her so much for her bravery and her commitment to teaching. I still do admire her and she is, I am happy to say, cancer free! She sees my friend Dr. Ansari too, another reason to feel I am in good hands.

I also had someone post to the Rare Cancer Forum who is an ACC/breast survivor. She said she was going to read my blog. I can't tell you how happy that made me. This disease is so isolating and to know that there is someone else out there that I can talk made me giddy today! Her name is Kristina and I hope she comments so we can all pick her brain when needed. I also am emailing a newly diagnosed person name Valerie. For this being rare, there sure seems to be too many of us. But thank god for the internet.

Tonight my favorite ex-boss made us the best dinner. She said she didn't want me cooking on my first day back to work. (She was right--I was very tired) I have to get the recipe--it was chicken and stuffing, complimented with almond green beens, a sherbet salad and zuchinni bread. THEN, Lynn brought over this amazing looking fruit basket of cut fruit that looked just like flowers. This was from her and Jami and I can say I think I have eaten almost all the watermelon already! Like I said, I am amazed at all of you. And Heather, thanks for the mug. I will put my chai tea in it. (by the way Heather, why haven't you commented??)

Andrew is home and happy to be home. The last night in Maine all the teams got together and traded things--mainly t-shirts and hats. He came home with three hats--one from Hawaii, Venezeula, and Canada--plus, three t-shirts. He sent Michigan and Niles stuff all over the world. He is grumpy about having to miss two games for football but said he wouldn't have done anything differently. I am glad to have him home.

Lonnie, you should see me trying to use this IPod. Josh thought he would give me some good walking music so so far all Ican get is some Nelly...when he gets home tonight I will need a quick lesson! Everything is downloaded and not a minute too soon since the worries are never far behind...

Still coughing a little bit, but salivary glands aren't worrying me as much. Off to a board meeting--first of the year.

Love to you all!


Sunday, August 19, 2007

A Day of Worry

Reality brings worry. Need to write them down so I can deal with it in black and white.

Worry #1. Still worried that I might have ACC in my salivary glands. My right ear hurts, and my first bite syndrome is worse than I remember. I also am coughing a bit. Irrational thought is cancer. Rational explanation is my right ear has hurt mildly for years because of my surgery in 2001, and my first bite syndrome hasn't changed all that much. I keep telling myself that my CT scan last October of my head would have shown something, as would the PET scan that I had done looking for cancer mets from the breast cancer. I keep thinking of the doctor at the tumor board who said "shouldn't we enhance her salivary glands" and no one seemed to think it was necessary. I think my cough is from allergies, and know that the PET Scan and Chest x-rays that I have had done show nothing. I am just so not trustworthy about scans anymore. Did I tell you all that I emailed my ENT from U of M about this breast cancer? And, believe it or not, he emailed me the nicest email back. He didn't deal with any correlation to the schwannomma and didn't seem to think it was unusual that I still had first bite syndrome. He did say that ACC of the breast is rare, but not unheard of, and does have a better prognosis than ACC of any where else. He also told me to keep him informed and gave me a great website for ACC (of all types) He told me to use his name if I needed to, as he knew the founders of the site. Damn, I just don't want it anywhere else! I did mention my concern (worse first bite syndrome) to the tumor board people who didn't seem to be too worried, and just pointed out that nothing is showing on the PET Scan. I sure hope that is enough.

What this shows you about cancer is this: every ache and pain is scary. I do know that each of my pains can be explained by something else so I have to keep telling myself that. When I first felt the breast cancer tumor, I couldn't explain it as it was a new sensation.

Worry #2: Still scared they won't get clean margins. I have posted a question to a "ask a doctor" site citing my pathology report and the depth of the tumor--this whole "extensively deep anterior infiltration" but "no tumor in muscle is seen" gives me mixed feelings, so I basically asked about mastectomy. Dr. Nancy knows my fears so I hope she scrapes the hell out me.

Ok, you have heard all of this before. Sorry, like I said it is a worry day. As usual, I am worrying about things out of my control. That is tough for me! I want to go back to worrying whether we have enough seats in the lunch room.

Andrew's plane got delayed in Philadelphia so he isn't home yet. Should be in Chicago by now tho'. Can't believe football is right around the corner. Andrew can't play the first game because he didn't get 10 practices in (state rule I guess) and then Uncle Danny felt he had to sit him a second game (boo! hiss! but we do support Danny no matter what) to be fair to all of the kids who have been working so hard...that means his first game won't be until September 7, yes, the day of my surgery. Waa. Ironically, we play Kalamazoo Central that night AT Central so Jim can just pop over from the hospital to the game. I am going to try to see if it is on the radio up in Kalamazoo somewhere.

Going to work tomorrow. Wahoo! Dread getting up as I still don't go to sleep very early but will adjust I am sure. Freshman Orientation is Tuesday for my little Joshie.

What a dreary day. I hear the heat is coming back full force this week, of course. That's ok.

As always,


Saturday, August 18, 2007

New template--still just my ramblings!

Don't be shocked by this new template. I really recommend blogging--it is so fun to mess around with. I liked my other one too but couldn't get the margins right on my pictures so I switched for now. Hope you like them!

Friday, August 17, 2007

09/07/07 is the day.

Appointments went well. Started with Dr. M, the plastic surgeon who reminds be a bit of Woody Allen. Woody checks me out and measures the width of my boobs and their "droop." Measures from my Adam's apple (if I had one) to my cleavage. I have no clue why he does that. Then nurse takes my boob "mugshot"--I take a card with about 7 numbers on it and hold it over my belly button while she takes front views and side views. Thank god no face or name!

My boobs are now out there for all to see--I even had to sign a release that says I won't sue them if my photos are distributed in public--egads, that would be very scary. Woody then takes us to a different room and tells me my best option, which is a simple mastectomy (Dr. Nancy does that) and then Woody does his thing. This will occur on September 7th, a Friday.Ok, so what happens is this: While Dr. Nancy is cutting off the saggy very bad bad boob, Woody works on "reducing" my left boob. When she is done getting out the very very bad bad boob, he should be done reducing and perking up the left side.(yes, they will send in any tissue from the good boob to check for anything bad. This is always done) He then moves over to the right side and inserts a thing called a "tissue expander" under my chest muscle. The tissue expander looks like a deflated ball and has an insert area that he will gradually, over about 3 months, fill with a liquid to "expand the chest area" so that in 3 months, a silicone implant will have room to be inserted. Each week, post op, I will head to Woody's office and he will "pump me up" with more fluid to continue to expand the chest wall. (You can't just place an implant up against skin as the skin "eats" the implant, so it has to go under something. If you had a regular boob job, your regular breast tissue would be there, but since mine is cancerous, they have to use my chest muscle to protect the implant. Just in case you were wondering.) Towards the end of the expansion process, they do this thing called OVER expansion, where they pump in 50 percent more fluid than I need, just to make putting the implant in easier. (Can you imagine what this will look like????) Then, when all the expanding is done, they remove the expander, place the insert and stitch me up. I am guessing this will be done around Christmas time. Sometime, I will also have to decide if I want a tattoo nipple (PK, you know your stuff!) but I could always go without one, since it will be fake anyway. I will only be a "piddiddle" if any of you know what that means! : )

I was not a candidate for the surgery where they use your belly fat to make your breast. Go figure. It certainly wasn't because there wasn't enough, but in fact, probably too much boob area to replace and it wouldn't even make a dent anyway, so the implant is it! Less recovery time, but the pumping up aspect takes time so that is a negative.

After meeting with Woody, Crazy Mil and I head to see Dr. Nancy. I am always nervous with her because she has pathology reports. The negative of the day was the estimated size of the tumor--6.1 cm. That is pretty damn big. (I have read of bigger with no less successful results so I am not that worried about it, but it does put me in Stage III, although Dr. Nancy didn't even seem to care about that) Dr. Nancy was still almost hesitant about the mastectomy, just kept hemming and hawing but said "I would just feel better". Of course there is no doubt I want it all out so she just explained the procedure a bit. My first question was if there was tumor in my chest wall since the part she took out came from that area, and she was quite sure it was ok. I was also concerned that even after the mastectomy there wouldn't be clean margins and she said that is when radiation would come in. That is still the unanswered question, as radiation isn't necessarily proven to help this. In my mind, that is the next really scary thing after the mastectomy--waiting to see about margins. But I have no other options and this is the best thing, so what's a girl to do?

So. September 7th is it. Surgery at 7:30 a.m.. Takes about 3 hours total. Woody and Dr. Nancy work at the same time, and then he finishes up. I spend at least one night at Bronson. Dr. Nancy says most of the pain is from the tissue expander, to which Woody said he can prescribe muscle relaxers if needed. I also come home with boob drains--those are a pain I hear but necessary. 4-6 weeks off of work from that day. But I am going back this Monday and will be there thru the first three days of school, thank goodness. I will feel like I can get a lot accomplished in that time and leave things in place before I go.

I have to tell you that knowing you are out there reading this helps me write it. Don't worry about making comments (although I love them!) if you can't. Just knowing that someone cares makes me love doing this. Also, I am so behind on my thank you notes but so many of you have given me the best things! Kim, Josh also thanks you for all the candy--we are fighting over the sugar babies--and Becky, the turtles are almost all gone. And Lonnie, you are too smart--Josh is downloading the CD's onto my new IPOD and I can't wait to listen. Vikki J. said these types of CD's got her through treatments so I know they will be helpful. I just can't tell you how lucky I am to have all of you. I sometimes feel so selfish and almost guilty for having such great friends and family.

I am sad to say that Crazy Mil (Ginger) is leaving for the UP tomorrow. Jim and I will miss her help so much. She and I have had the best time one could expect when going through this crap. We have some logistical things to figure out with my appointments, but will get through it. Ginger will be home in late September, just in time for my first post-op appointment with Dr. Ansari.

Need to go to bed. Missing Andrew like crazy but loving my little Joshie. He is the sweetest thing on earth!!!

Thursday, August 16, 2007

Cemeteries, Lost Wallet, Runway Rage--and yeh, I still have cancer.

Before I begin this, know that we are home, happy but tired. Now I get to complain.

So we get up Wednesday morning, me depressed that we have to come home and face reality, but happy at the thought of seeing my dog and sleeping in my own bed. We figure we need to get to Boston by 5:00 p.m., as we have a 6:15 flight. Decided to go say goodbye to Andrew at his hotel first.

Knock, knock, knock. Loving caring mother whispers into door: "if you want some money, you will get up." A minute later door opens to Black Tomb of the Stinky Athlete. Andrew: "Hey." Loving, caring mother: "we came to say goodbye." Andrew: "Bye."

With that dramatic scene done, we still have some time before we need to leave and since Ginger, who will now be called Crazy MIL (crazy mother-in-law), had learned of the actual cemetery where they filled Stephen King's Pet Semetary, we decided to go check it out. After driving out into Maine for about 15 minutes we find this very old, and I mean old, small cemetery with most gravesites from the middle 1800's. And yes, it was drizzling and raining but that didn't stop Crazy Mil and the rest of us from exploring. Actually, it was pretty neat to see the old names and read some of the tombstones, but Jim got creeped out early and kept saying "let's go...we shouldn't be walking all over these dead people!" I of course was reading names aloud and found a huge headstone with the name CLAPP on it, and as only as I can do, I say "Hmm...I wonder if she died of the clap?" Jim, at this point, says, "Geeze!!!!!!!!!! Way to tick off the spirits!" so he high tails it to the car, and locks the doors. (I did feel bad after I said that and said a quick prayer asking for forgiveness.) Anyway, that was neat but as soon as we got in the car, Jim says "we are probably cursed now."

So we head for Boston. About 2 hours out, Jim can't find his wallet so we stop at a rest stop and open all the luggage and go through it--dirty clothes, clean clothes, travel bags, you name it, we had it strewn all over the parking lot looking for the wallet. No wallet. I tell Jim he will have to live in Boston the rest of his life. He does not find me funny and pouts the rest of the way to Boston, mad at himself for losing it and a bit anxious about not having ID to board the plane.

Get to Boston--trip on Thrifty Rental Bus to Airport was just as traumatic as first ride. Boob screaming in pain from all the juggling...but we finally check in to see our flight is delayed. The good news is, no big deal about no ID for Jim so he doesn't have to stay in Boston forever. He does have to go through some extra security checks but we figured they may not have known who he was officially but he certainly didn't have any weapons or anything strapped under his t-shirt or Cubs hat!

We finally board the plane at 7:20 and ended up sitting on the runway for about 2 hours because O'Hare called a "groundstop" due to weather. That was awful--they did invite us to come tour the cockpit and gave us pretzels and water but it was still mind-boggling because of stale air and cramped seating. I was sitting next to a rheumatologist so we had quite the conversation the entire flight--and of course I told him about the cancer, to which he asked all kinds of intelligent questions being a physician and all, but didn't offer a cure or anything : ) He did however, suggest that I get my slides sent to some cancer centers just for more information. He was also a Harvard med school professor and was very, very nice. Once we took off, it was uneventful and quick, but we had no idea if we had a flight from ORD to South Bend.

Two good things happened at O'Hare--our flight had not left and Andrew had called with a message that they had found Jim's wallet at the baseball stadium and it was now in his possession. Flight to South Bend was 16 minutes, but of course they lost our luggage so I am waiting for that to arrive today. I think we got into bed at 2:30--boob throbbing but damn, it was good to be home.

Two doctor visits tomorrow. At 8:45 a.m. I see the plastic surgeon, Dr. Messenger for an hour consultation. Then I head to Dr. Nancy's at 11:30. Depending on what we decide to do, it is possible that my surgery might not be for another month. I have very mixed feelings about that, but they assure me it is safe to wait and necessary, since both reconstructive/mastectomy would be done at the same time, it will eventually save time. The good part of that is I will go back to work (hopefully Monday!!!!) until surgery. Also, Crazy Mil leaves for the UP on Saturday and she has been my co-hort in all of this and if we delay it, she may be back in time for the surgery. The bad part is it prolongs the mental side of this--which allows those little cells to keep multiplying and my mind to go crazy. Again, they are telling me it is not a big deal to wait if needed but if still freaks me out.

Lonnie, if you read this, today I received your flowers and they are beautiful. East Main hung on to them knowing I was in Maine --love that about a small town. Anyway, they are so gorgeous I am taking a picture of them. I will call you later but thanks so much. My other plants are doing well too--thanks to Mimi who I think watered them.

I am so lucky to have all of you. And when the luggage arrives, I think the curse of the cemetery will be lifted!


Tuesday, August 14, 2007

A very good day I must say.

Ok, the steri strips are itching like hell right now, and I think I keep losing a few across the state of Maine, but all in all today was a spectacular day with a lot of "wow"s at various views of the ocean from the top of Cadillace Mountain! It was very cool--we just kept driving up and up and up and up--I had Jim open the window of the car to take pictures and then got scared he might fall out over the edge. I did make him drive down as it seemed so steep! But it was gorgeous--something I have never seen before. Even John thought it was pretty inspiring, but of course he still likes the UP better because there were "SOOO many" people at the top of the summit.

After we did that we drove into Bar Harbor, which was so packed with people we just did a big loop and headed home. Jim was thrilled because he saw a HUGE buck in a yard--it impressed John too. Haven't seen a moose but the locals tell us 2-3 people are killed a year in the area because when your car hits a moose, the moose wins.

Tracee, from Dr. Nancy's office called and left me a message on my voice mail and I have my first appointment with the plastic surgeon on Friday at 8:45, and then I think I see her at some point that day for talk about the mastectomy and to check out the lumpectomy post-op. I will be reading a lot on the way home from here I think--I keep coming up with questions but my sister and her boob nurses gave me this very informative book by Judy Kneese called "Your Breast Treatment Handbook." It even has decision charts to help you weigh options in your head...when I do the lumpectomy vs. mastectomy chart, mastectomy always wins so now that I DON'T have an option, it is nice to know mentally I am ok with losing this floppy, bruised, and sliced up thing. (Sorry boob--you're killing me so no more niceties!) : ) I also still have bruises from all the IV's and blood tests but they are fading.

I would say I thought of cancer maybe 6 times today. That isn't too bad. And when I read your comments I smile MORE than 6 times so I am winning! Vikki--I DID flick that little man off my shoulder and so far he hasn't climbed back on yet, but I know he will and I will hit him off again.

The people here are wonderful and seem to love doing this Series. Each day they have school bus drivers who drive about a 3 mile loop from the hotel to the field every 10 minutes or so --that is all they do! So when Andrew wants to go to the field he just goes to the front of the hotel and they take him. Niles certainly could host a series--we told many people about Champ's Field, the high school field, and Thomas Stadium and they thought it sounded awesome. (They are much more impressed with Muhammad and Lonnie than Stephen King, although Lonnie, you are right, they say he is a great neighbor and is usually at the games. They say he will be here this weekend when the game is on ESPN)

The most precious memory of today was watching Andrew sign autographs. The kids here think all of the players are out of this world and even our 1-2 Niles kids thrill them!

Leaving for Boston around 11:00 tomorrow for a 6:15 p.m. flight to O'Hare. Unfortunately, won't be home until 11:30 at night. The Niles team has the day off tomorrow but plays again Thursday night at 8:00 p.m. We will all sit around the computer to listen.

Happy thoughts to all of you. I am tired and going to bed!

We mercied the Lithuanians! Woo-hoo!

Quick post as we are on our way to Bar Harbor, and Cadillac Mountain, a big hill that you can see the entire coast from certain points.

We won! Played like we USUALLY do. I think we had 14 hits in 5 innings...won 12-2. Andrew hit the game winning run in, went 3-3 today and had a good defensive play too. We think it is Andrew's lucky lobster head carcass that he has in the dugout from our dinner last night.

I have calls in to Dr. Kalinowski to see my next appointments--Jim had to sit by me on the hotel bed to make me make the call. I want to continue to pretend I am cancer free, but after talking to the nurse, I know this is just part of the fight. More tonight. Molly

Monday, August 13, 2007

Game--boo! Lobster Stew--YUM!

Game stuff first. We lost. Played limp and without enthusiasm. New Jersey came out hitting Taylor Ort--then we settled down but just didn't get enough hits at the right time. Andrew had a good game defensively, and also had a great hit down the third base line so that was good for him. Jim and I just returned from watching Hawaii play Georgia and have decided it will probably be Hawaii and Venezeula in the championship game. But honestly, there are some really good teams here so you never know. The team from Texas, who we play Thursday, is a team from a town of 100, 000. Both the East team and Venezeula were here last year, as well as Hawaii so you know they have some strong programs.

Went to Captain Nick's tonight for dinner. Had the most awesome lobster stew, which was more like huge chunks of lobster in a milky/buttery broth. Andrew had a full lobster--I took pictures of him in his bib. I think his lobster was $15, with all the sides. It was nice to spend some time with him--we were feeling so low after the loss but got to spend some time with a few of the players and they are doing fine--lots of smiles and laughter. Most of them are being very friendly to the other teams and are making friends. Andrew said he tried to talk to the Venezeulan team but their English was as bad as his Spanish. The Hawaii kids are super happy and outgoing kids and the Asian/Pacific team speaks English. Tomorrow we play the Lithuaians. They are skinny tall blonde kids who play decent defense, but are also winless. All in all, it still is worth every minute, even though our bats are quiet.

Was reading today about the BRAC1 and BRAC2 gene test and based on what I have read, I should probably be tested. (anyone diagnosed before 50 is a candidate) If I was positive,then I would probably have both breasts removed and my ovaries. I am about ready to take everything out I don't need! My latest worry is my salivary glands--as you all know, Ihave that crazy first bite syndrome from my neck tumor back in 2001, and each time I take a bite of something, my salivary gland hurts terrible. While this isn't anything new, I do remember telling Jim about three months ago that I thought the pain was worse than before so my mind is going nuts on me. In case you missed it, my breast cancer is normally found in the salivary glands. The tumor board experts didn't seem all that concerned that I had other cancers but did tell me to always feel my neck for lumps, but since my neck is still numb from the surgery way back when I don't know what is a lump and what is residual crap from that. Just tonight's worry. Tomorrow I will find something else.

Gerri Sly--thanks for your email. I just read it today and your line about being safe with the mastectomy lifted my spirits. I am trying to look at it as a safety measure but do wonder if it is possible that the cancer has spread into my chest wall or the muscles? I guess I need to ask Dr. Nancy that! I was supposed to call today or tomorrow to get my next appointment info but chose not to...she said Tuesday would be fine and I just wanted to avoid thinking about it.

There are minutes I feel like such a fraud. I act like I am handling this well and most of the time I think I am, but the thought is always right there--eating away at me.

Fun stuff today--we went to Stephen King's house and Lonnie, I really could have walked up and rang his doorbell but he is in Australia. (if it was Derek Jeter's house I would have camped out) The gates were wide open and the house is right there on the street, just like ours is. The gates had gargoyles and spider webs and bats on them--the house was HUGE and old, almost Victorian looking. We took family shots and then went and got Andrew after his game and made him take photos too. Then we found this 31 foot statue of Paul Bunyan overlooking the waterway so that too became a photo op.

Our kids are representing Niles very well. The Maine locals have been very supportive and know our kids by name. Also, a man by the name of Paul Jacobs, a 1985 NHS grad, lives here and came with his Niles Vikings hat on and cheered us on. Any of you remember him?

Tomorrow is our last game to watch--we are planning to drive to Bar Harbor and see the ocean after the game. Air conditioner in our room is lousy but we can open the windows and that is helping as it feels like football weather at night.

Still trying to be brave. So much more crap ahead of me so I am trying to stay in denial as long as possible. ALL OF YOU: ENJOY EVERY SECOND YOU ARE GIVEN AND DO NOT SWEAT THE SMALL STUFF!!!

Will write tomorrow. As always, my blog is my drug!


Sunday, August 12, 2007

We lose. But tomorrow is another day.

Ok, Venezuela was the real deal--we lost 12-6 mainly because we didn't hit the ball and walked quite a few. They were very fundamentally soound on defense, and hit the ball up the middle just about every time. Their first pitcher was very good,but when they got up by a few runs, their sub pitchers weren't all that good. I think they are beatable, but not if we don't play our best game. We play the East team tomorrow; they are beatable too-- Kids are having a great time; today for dinner they had seafood newburgh, which Andrew said was awesome. They have a huge tent where the kids eat for free whenever, as long as they have their ID badges on. Tomorrow Ginger and I are going to Stephen King's house to have our pictures taken outside his gates. All the locals say it is very creepy looking. We also got some directions to some restaurants with good, but inexpensive lobster. Mimi is listening to the games on the computer in case you all didn't know you could. We play at 1:00 tomorrow.

Our trip here was very uneventful. Of course,we laughed a lot. We flew from South Bend to O'hare and had a two hour layover--while we were sitting in the airport in Chicago, after walking forever through the concourse, I was trying to put something in my pocket and realized I had my denim capris on BACKWARDS since we left Niles. We about died. Then, on our shuttle from the airport in Boston to our hotel, I sat in the back of the shuttle bus which was a huge mistake, as our driver drove like a maniac and hit every single bump. It was so painful to my poor right boob I finally just hung onto the boob with both hands to avoid bouncing around so much. A scary thing when you have cancer is you have irrational thoughts--as I bounced around in the back I kept thinking that the cancer cells were bouncing throughout my boob and into my body. Tonight I got pretty choked up watching Andrew--I am so proud of him and just don't want to miss any part of my kids' lives. Joshie and I had fun in the stands, although I embarrassed him when Ginger and I screamed "HI PAM" really loud hoping that Pam would here us through the radio broadcast. Another interesting thing about Maine is all the "Attention. Watch for Moose in Roadway." signs. Haven't seen one yet, but may go moose searching tomorrow. : )

Again, thanks for all your words of encouragement. Every day is so different--I never know how or what I will feel. And when I am not being brave, I read your posts and feel so much better. Cancer is awful, but living is so worth it. More tomorrow.


Saturday, August 11, 2007

Upbeat and Maine bound

Feeling much better today after seeing friends and getting Andrew off to Maine. (Plus, I know he has now landed safely.) Betty, my dear, I ADORE the picture frame and card you got me--so much I am making the verse a permanent part of this blog. I am sorry I haven't called, but know that I will have plenty of time when I get back to do some lunches! I love each and everyone of your comments. All of you.

Re-read some chapters last night and reconstruction sounds a bit daunting, especially the kind that they take fat off your stomach or butt to add to your boobs. Although that sounds great, I think I will opt for perky little implants 'cause the less surgery I have the better. But it will all depend on what the doctor says.

Enough about sucky cancer. Our Howard Johnson's in Maine has wireless internet so I will keep you all posted on the games. I guess my lovely son was on TV last night saying he can't wait to talk to some "Mexicans and Japanese" So much for political correctness! Jane Brandstatter gave me some great Maine tips--so now I am really excited and have been able to put this cancer thing to the back of my mind. Plus, physically, I feel better--not so sluggish. I may even get a drink on the plane, since I hate to fly. (ooh...I forgot, I have some Xanax I could take!) WEE--HEE!!!!

I love love love you all!!!


Friday, August 10, 2007


You know what I want to write for my title but can't. Dr. Nancy called and said that the tumor is too infiltrative to leave as now I have to have a mastectomy. She said this tumor isn't like a normal round tumor that you just remove, it has fingers and those fingers were going everywhere in the piece she took out so "to be on the safe side" (her words) she said she thinks she needs to do the mastectomy. She said she talked with the pathologist twice and Dr. Ansari and together they decided this was the best thing, as not much else (like chemo) helps this kind of cancer except to make sure it is all out.

On the good side, the node was still negative, which I guess is the saving grace of the day. She also encouraged me to go to Maine, and when I get back I will call her and will have two appointments, one first with the plastic surgeon and then her to schedule the mastectomy. It will give me a few days to read up on things; I already have a million questions about it but couldn't think of them when I was on the phone today. She is still great tho'--she didn't paint this dismal picture but was clearly disappointed she hadn't gotten it all. The other thing that scares me is that NONE of this showed up on any test at all, even the MRI's and PET SCAN.

I am so sad--not to lose the fat boob but just because I thought things were going so well and this seems like such a set back. I also have to re-read all my newly purchased cancer books to read about mastectomy and reconstructive surgery, as I skipped those chapters. : ( I will probably have to miss an additional four weeks of work(besides the two I am missing now) and all of that just stinks. I feel bad for my support people too, as this is so hard on everyone. I want to just pretend it isn't there.

Well, it's back to the drawing board I guess. The good news is that we decided as a family to go to Maine to watch Andrew play. We can't afford it and even though I still feel sort of crappy I am hoping it will help the mental side of all of this. We are only going for four days as Jim has to get to work, and I thought I had my first radiation treatment. But those are all cancelled for now.

On a lighter note, I got the TWO biggest plants today from my dear friends. When Jim carried them in, you couldn't even see him behind the jungle. Although I sound miserable right now, I am still smiling at all of you who have been here for me. I am also quite intrigued with the idea of reconstructive surgery on these saggy boobs...Dr. Nancy said it is a law that insurance has to cover reconstructive surgery on BOTHS boobs, not just the cancerous one so perhaps while I am in Maine I will check out some gossip magazines for some smart, perky boobs to aim for...

Love you all.


World Series info

Still waiting for phone call from Dr. Nancy. Think: Clean margins, clean margins, clean margins...

Thought some of you might like to see where Andrew is headed...we play Venezuela Sunday night. They are defending champs so...

Doesn't matter what happens now...the experience will be worth it I am sure. Here is the website:

Thursday, August 9, 2007

Ugh day

Do not feel good today. Jim thinks it is a crash from the adrenaline rush of Andrew's baseball games. It is nice to be home but reality is setting in and is complicated by my 16 year old flying off to Maine for a once in a life time experience and me sitting at home wondering if I can handle going there or not. Still nervous about what pathology will say tomorrow. I keep telling myself that it will be okay no matter what but I want clean margins SOOO bad --and don't I deserve some good news? : ) I have just read too many cases of having to go back in for more tissue. I don't want that complication and at this moment I am not sure I could handle it. Well, of course I can handle it, but darn it, I don't want to...

I took off the bandages today and I have two incisions and both aren't too awful looking--but the boob area underneath is definitely a little flatter. My boob sort of looks like a torpedo with some of the blue dye still in there! There are butterfly bandages over the incisions but those stay until I see Dr. Nancy in a week. I have no appetite for some reason--and my throat still hurts. Today is the worst I have felt, but all in all it is ok. I even did some laundry and tried to unpack, just to get ready to pack Andrew again. Jim is exhausted from work today and is taking a nap so the house is quiet--Josh is at a party and Andrew is at football practice.

I continue to do research about this kind of cancer and although there is a rare cancer website devoted to it, people don't post very often so I can't communicate with actual survivors of this type of cancer. I have heard from a few breast cancer survivors and my gosh, that has been helpful. Had a long talk with Vikki, a 16 year survivor today, and her "I'm gonna beat this devil" attitude was just what I needed. Her memories of how she survived are very similar to what I am going through--it is just awful when your first thought every morning when you wake up is "I have cancer." She promises me this will go away in time but remembers it clearly.

Ok, I need to quit feeling sorry for myself here. Back later, hopefully with a better attitude!

World Series bound!

We are home and Andrew's team won the Central Region championship game! He leaves for Maine for the Little League World Series Saturday morning. We take on Latin America Sunday night at 8:00 p.m.

Took bra off for first time and boob is scary looking but still there and doesn;t look like a baseball came out of it. Bandages come off tomorrow. Much more stiffness in my arm and back but definitely tolerable. Starting to worry a bit about pathology report--I told Andrew's team that their games have gotten me through these past three why not go to Maine to make it even easier? My buddy Anthony Gladden got a HUGE hit tonight--love that team. What a great group to represent Niles. It is 2:05 a.m. Love my kids love my family love my life.
Time for bed. Still staying strong.

Wednesday, August 8, 2007

Simple things!!

Here I am sitting in Peru, Illinois at the public library with Josh. My back is stiff and I think my boob is still numb-- a slight headache all night, and the worse thing is my throat from the ventilator tube-- but other than that, the lumpectomy was a piece of cake so far. I can't take a shower until tomorrow. I had a really wierd night last night...we had decided to stay in Niles if Andrew's team won, and then come to Peru today, but Andrew called(they won again, but the tough games start today--lose one and we are done) and Jim said he really seemed to "need" to see me, so I said, what the heck--let's go! So we got in the car at 9:00 p.m., with my handy dandy ice bag (I call it my ice clutch purse) and off we went. Ginger did not want me to go and did her best to talk me out of it, but I felt ok at the time and just the thought of Andrew alone without family made me want to go. The ride was very pleasant, Jim and I chatted about books we're reading--he's reading one about a father of a high school baseball player and I just finished The Kite Runner, which was awesome and riveting for lack of a better word. Josh was snug in a blanket in the back seat listening to his I-Pod. It was very simple and so underappreciated in the best of times so I am trying to take in these moments and really cherish them! When we got to the Tiki Inn (think Golden Eagle in the middle of nowhere) Andrew's teammates were just hanging in our room and offered to clear out but it was nice to just see them interact together, as there were kids from Brandywine, Niles and Buchanan. But then when we went to bed, despite this surgery and the lateness of the night, I couldn't sleep--my mind was running a mile a minute going over the days events and how much, in the course of a week, my life has changed but also stayed the same.

I will hear from Dr. Nancy on Friday and I see Dr. A on Tuesday, and the new radiation oncologist next Thursday. Right now, I feel good enough to go back to work but Dr. Nancy will not let me. I am thinking about asking her to release me to make my own decisions in terms of when I am too tired to go--I am fearful that radiation will wear me out too, so why not work a bit now before radiation?

I can't tell you how much your comments and prayers have meant to me. Lori, I haven't had a chance to talk to you in person yet, but appreciate so much the gesture of getting me that literature...I have read through it and placed it in my boob binder that I have built with all my papers, research, etc. I am hopeful I WON'T need it, but it is nice to know it is out there. Also, my good friend Lonnie has offered to fly me anywhere at anytime to see anyone who knows more about this cancer, but at the moment, I think I am in good hands. But having friends and family supporting me is the most important thing.

I have another funny Ginger/Molly story...we were driving home yesterday and Ginger was in the backseat (Jim was driving of course) so I put Ginger on cell phone duty to make all the phone calls to tell of my great results. Well, as you know Ginger and John don't have a cell phone but Ginger was doing a great job of scrolling through my contacts and making calls. I was quite impressed with her skills for someone who has rarely used a cell phone. Anyway, in the middle of her calling out to people, an INCOMING call came in, which confused her a bit, but I saw she was looking at the screen so I said "say yes", meaning hit the yes button to the question "do you want to take a call from Josh", so yup, you guessed it, she looks straight at that phone in a very serious voice and loudly, clearly, says "YES" into the phone. I just about wet my pants and then she started laughing so that I am sure we missed that call. Of course, Ginger is very smart and did know enough about phones that do dial on voice commands so once we stopped giggling, I complimented her on her knowledge of technology. But my phone needed her to push the yes button. Simple things. I am telling you--appreciate them!!!

Going to go out to the field now. Andrew plays at 5:45 and if they win, they play at 9:00. Either way, we will be home late late tonight--either as a world series bound team or as a football player. (Uncle Danny is having small issue with this baseball business!)

Thanks again for all your comments.

Tuesday, August 7, 2007

So far, so good.

Ok. forgive me--Jim thinks I am still "stoned" but I have just gotten home from the lumpectomy and want to scream NEGATIVE NODE!!!!! NEGATIVE NODE!! WAHOO!!!! The sentinel node was negative, and Dr. Nancy came out and told my family, with both thumbs up and a huge smile, that she thinks all that she took out was good, clean healthy tissue. She took out what was over the size of a baseball--this isn't the tumor size but what was around the area where the tumor was. (She said that empty area (from the biopsy) was about the size of a business card--so I guess it was a little hollow, so she cut all the way around it like a donut I am imagining.) Now, both the sentinel node and the tissue go to pathology for major testing and I should know the results on Friday. Rarely will the sentinel come back positive after the test in the OR, so I am choosing not to worry about THAT anymore, and if the tissue comes back with some cancer in it, then I will have to go back in for another "re-excision," which will be a major pain in the neck but certainly doable as long as they get that cancer out! I suppose I could worry that there is a different kind of cancer, but Dr. Nancy said everything looked and felt good...she actually feels the tissue and she said it all looked good and felt healthy.

Again, I was lauded and applauded for my big fat fatty boobs. For once fat is good! (ok, I know that doesn't make my poor heart happy--but for now I am at least "not lopsided")Makes for less noticeable changes, and although I do have some gauze on my incisions now I am wearing a regular shirt and you can't tell the difference at all. My nipple however is as blue as the sky from this dye they injected and of course, everything else that is coming out of me is blue--ok, maybe Jim is right. Perhaps I am still stoned if I am sharing that kind of info!

The surgery took about two hours, which was long for those waiting for me. We thought Dr. Nancy was going to come out and tell the results of the node biopsy and she didn't until the end, so that freaked out both Jim and my dad a bit--Jim figured they were taking out more nodes but as it turned out, all was good.

I am in no pain yet--the incision at my axillary line just feels like I have an annoying piece of tape on it, but the boob area is still pretty numb. All my stitches are internal, except for two butterfly stitches that Dr. Nancy will take out at my 10 day appointment.

More later--I am 6 hours post surgery and feel pretty darn good. Glad this part of the journey is over at least until Friday when I get the pathology reports. I have found taking these little victories to heart makes it so much more bearable.

Time to go pet my dog. : )

Monday, August 6, 2007

Baseball and Boobs

Ok, first off--THANK YOU to all of you who have commented! I have been in Peru, Illinois with Andrew and had no Internet access so I couldn't blog until now. Your comments made my day!

Andrew's baseball team is 3-0 right now and tomorrow determines if they go to the semi-finals of the Regional Tournament. Tomorrow also determines my future, as I have to be at Bronson at 9:30 a.m. At 10:30, Dr. Nancy will do the sentinel node biopsy, that involves an incision right below my axillary hair line (axillary is a much prettier word than armpit so I feel inclined to use it.) I am SOOOO scared about this part because if there is cancer in this node, it is likely it has gone to other nodes and that puts my cancer at least a Stage III, which is way more serious and means CHEMO. BUT, as I said before, it is very rare that it goes to the nodes but I think odds suck when it comes to me, so there you have it. The other big issue about tomorrow is Dr. Nancy getting "clean margins." After the node biopsy, around 12:45, she removes what is left of the tumor. (at least 1 cm plus is still left by the pathologist's estimation.--sorry Sheryl M., I had to ask how big a cm. was!!!) Getting clean margins will be difficult for Dr. Nancy because this tumor doesn't look like other tumors and we already know that the tumor isn't all out, even though the "full body" scan I had didn't show anything in the boob. (the full body scan is called a PET Scan and is really cool. At my tumor board meeting they had this hologram type body image on the wall of MY innards--I had to stifle a laugh because the inside of this hologram WAS my body but the outside wasn't. They must have radiologists who airbrush off the layer of fat rolls because that hologram was skinny! Ginger and I laughed the whole way home because she thought the same thing.) Anyway, clean margins means removing tissue until she has at least an inch (I don't really know how much but I will just say that) of cancer free tissue that surrounds the tumor. That is the only way to "guess" that you get each and everyone of those damned pyscho cells. Now, in case you are wondering, if the node turns out positive, then she has to take out more lymph nodes...and that means I have a drain put in my arm for excess fluids. That will stink big time. So my mantra tonight is CLEAN MARGINS, NEGATIVE NODES.

I mentioned earlier about Ginger, my mother in law. She has been my rock through all of this--she has been at every single appointment with me. Some of you probably wonder why Jim is missing out on all the fun---he is STILL the best husband in the world but doesn't need details, where Ginger has gone through this with her parents and is pushy as hell. When I was first diagnosed, the earliest I could get in to see Dr. Nancy was Aug. 8. But the "bitchy mother-in-law" worked her magic and here I am having surgery tomorrow! Ginger's involvement also allows Jim to work and keep things as normal as possible with the kids. He is so freaking supportive about everything--I am very lucky to have him. Back to Ginger--I can't tell you how much we have laughed through all this. First of all she can do an awesome inpersonation of Dr. A's accent--she loves to repeat his comment: "You are very large breasted woman. You get lumpectomy, not mastectomy. You have mastectomy, you be lopsided." Also, bless her heart, when we were driving somewhere, she said "I just wish is was me who was going through this." And I said, "Hell no! That would be horrible!" After a pause I pointed at a dilapidated truck that was passing by with an elderly couple and I said "I want it to be somebody like them, who I don't know. (I know that is AWFUL, but I was being honest at the moment.) She got this sorrowful look of her face and said very seriously, "oh no, their truck is too run down. They couldn't make it to their appointments." We cracked up.

It is now 11:53 p.m. I can't have any water, food, nuttin' after midnite so I need to go take a big drink of water and go to bed. Yes, I am scared but mainly because I don't know the outcome. I will deal with whatever it is. Before I go, I must have one prideful mom moment--Andrew hit a grand slam last night, his first one since he was twelve. When we got back to the motel room he said, "that was for you mom."

I will post as soon as I can And please leave comments--it truly makes my day!

Thursday, August 2, 2007

Cancer sucks. August 2, 2007

I think I will title all of my blogs that-- then again, that is pretty depressing but it sure is a great place to start. But before I do, special thanks to my pal Kelly for setting this up for me. Anyone who knows me knows that I think writing is therapeutic (along with coloring) so when I got the BIG "C" diagnosis, a blog was perfect! (Xanax helps too!) So here I am.

The words "they think it might be a cancer" rocked my world July 19, a Thursday morning. This was after almost 6 months of messing with a painful lumpy something in my right boob. I did all the right things--went to my doctor in late February after it didn't get better with a menstrual cycle, and then had a diagnostic mammogram and ultrasound that showed nothing.(I have also had yearly mammos since I was thirty five--I guess I was considered high risk because I have an aunt who had her breast removed and because I have really dense breasts) But bless Dr. Stanley(my now retired family doctor)--after thinking quite a bit over the phone, she said, "You know, the gold standard is to see a surgeon." So I did in early March. Together, we looked at my films and at the time, the lump wasn't really as lumpy so we decided to try eliminating caffeine to see if that helped. I HAD been drinking a lot of coffee and had no interest in any more tests and since my films were negative, I said three months is ok to wait. Well, it didn't get better so when I went back in, he said "let's take it out." So we did--fully expecting benign tissue--at least that is what I kept telling myself.

It's wierd--let me digress for a second--even back when I first felt the pain there were signs everywhere that this was something serious. And I don't mean physical signs. I wasn't really worried that it was cancer (compared to all my other worries about cancer) but everywhere I turned there were ads for cancer clinics, Elizabeth Edwards' cancer had spread to her bone, etc. Deep deep down, I think I knew. Can't tell you why, but there was something. Also, in the past, when I have had medical issues to worry about I always prayed that it "wouldn't be cancer" (my schwannoma) or it "wouldn't be cystic fibrosis (my son, when we discovered he was allergic to pet dander but the pediatrician wanted to rule out CF), or "please don't let it be a tumor" when my hip hurt. THIS time, however, I felt the need to pray "God, just let me handle whatever it is." Some might say I didn't pray "right", but if anything, this just confirmed that someone WAS listening! Ok, enough about that. I am not a deeply religious person but do believe in God and the power of prayer.

Adenoid Cystic Carcinoma of the Breast. Bet you never heard of it, huh? Well, no one else has either, including every freakin' doctor around. I should say they have heard of it, but no one around here has personally seen it. It is the rarest of all the 15 some types of breast cancers, with a less than .1% of all tumors being this lovely thing. When Dr. H (my first surgeon) told me the diagnosis, he acted like he had just gotten off the internet reading about it--but what kept me calm was the term "low aggressive." Before I even went to him for the official diagnosis, I had decided to get a different surgeon in Kalamazoo, where my sister (a nurse) recommended this spit fire of a doctor who I will call Dr. Nancy. I decided to leave Dr. H for a variety of reasons, but mainly because I wanted to be with my sister and at her hospital and this Dr. Nancy's reputation as an awesome boob doctor, and an awesome patient advocate. I also had already chosen my oncologist, Dr. A, a well-known doctor in South Bend. When I left Dr. H's office, I already had appointments with both Dr. A and Dr. Nancy and believe it or not, a HUGE sense of relief to have a name to what I was dealing with. I only cried for about 10 minutes by myself in the doctor' s office while everyone tried to get me in to see the new doctors. It felt good to cry finally, after worrying for so long.

The very next morning, Dr. A's (oncologist) visit was very reassuring. He is a little man with BIG experience and although I love his bed side manner, I was a bit taken aback when he said, in his Middle Eastern(?) accent: "Your kind of cancer makes doctors sweat." Gulp! But he reassured me that he could help and although he hadn't personally dealt with it, his prognosis and plan of treatment matched what I had read on the Internet. (I read A LOT, despite there not being many cases, there are some good links) We planned for a lumpectomy with radiation, and depending on my sentinel node results, most likely no chemo as this cancer does not respond to chemo. I came right out and asked him if I was going to die and he said (in Middle Eastern accent) "You will live to 102." God love the man.

Ok--gotta live life now--packing for my son Andrew's trip to Illinois for the Little League REGIONAL tournament. We are Michigan State champs so that is just cool. Thanks for caring and for reading! Please check in and check back!