Sunday, November 23, 2008

For Karen.

Since there is a new "sister" in this ACC fight, I thought I would save her some time reading through my numerous, lengthy, sometimes stuid, sometimes whiny, posts and just write some facts about ACC as I know them. So Karen, here it is in a nutshell.

ACC in the breast has a way better prognosis than ACC in the salivary gland. Do not get the two confused.

The reason, doctors say, is because the chances of getting clear margins in the breast are way better than in the neck area. The most important thing as they get all of the tumor. My tumor was so big that I had to had a mastectomy.

PET/CT scans are the best way to see if it has spread. However, PET scans don't pick up slow growing cancers very easily so the CT is important.

I was never told the GRADE of my tumor. I would ask if you can. Stage is interesting--just basically goes on size to tell you the truth.

It isn't likely that your tumor has gone to the lymph nodes but I still recommend a sentinel node biopsy.

I was going to have a lumpectomy but when they couldn't get clear margins I had the mastectomy. I 100 percent recommend the mastectomy--radiation might work but getting the tumor out is the only way to go.

I "googled" "adenoid cystic carcinoma of the breast" at least 2938597934 times. I learned a lot. Much of it very positive. But there are no guarantees with ANY cancer. But the odds are better with this cancer for the most part.

Chemo does NOT work on this cancer and if you have a doctor who tells you otherwise, ASK for the research that shows that it works. There is none. Chemo is nothing to take lightly.

My biggest fear is lung mets. That is where the cancer will typically spread. Most likely, it hasn't. So far, my lungs are clear.

I see my onco every six months.

More later.


Saturday, November 22, 2008

Another ACC 'r

I just got an email from my rare cancer forum and there is a new member who is 43 and was just diagnosed. I know how scared she is and wish i could make it go away. I hope she visits my blog so she can see that there is life during and after cancer and it is going to be ok.

Having said that, yeh, I still worry. A new thing for me though is to not obsess over physical changes. i have had this ear ache for ever, and now I get minor spells of dizziness when I turn my I have decided I have some sort of fluid in my ear. Good enough for me.

Jim got his new (used) car yesterday. Its a black Yukon XL which is very similar to his other car, just younger and nicer. He seems happy and i like how slippery the seats are and how clean it is. Nice thing about totaling your car--you get a new, clean one! : )

Kalamazoo College is coming to school Monday to talk to Andrew and another senior football player about their program. The coach said that there are 13 football players that also play baseball so that has gotten Andrew's attention. K-college is 30K a year so this will be an interesting conversation! : )

That's all for now!


Sunday, November 16, 2008


We did survive last week's car issues and already have a settlement on Jim's car. We felt it was fair based on all my research and on Monday, the money should be deposited in our checking account. We have our buddy Tim looking for either a Yukon XL or Suburban for only requirement is a DVD player--we seem to take long trips in it so that would be nice. Even so, we could always just buy personal DVD players for the kids.

Discussions in our household have turned to who is going to the UP with whom. Right now, the plan is that Josh will drive up with Uncle Johnny and his boys the Friday before Thanksgiving. I am worried about his missing his math class, but he swears he has it under control. Then, on Tuesday, Andrew will drive up with Chris and Tate, after the boys are done with basketball. As of now, Aida and the kids are driving up on Tuesday--brave Aida--and then Jim, Danny, myself and Shady will come up Wednesday. I am not sure what Matt and Brooke are doing--they may even go with us on Wednesday. Not sure if Chase is going. Aunt Pam is not going this year--she is on call--so that is a major bummer. Ginger loves having us all up there--and as you all know, I love it too!!!

Danny nominated Andrew for the Moose Krause Scholar Athlete award for football this year. The nominees come mainly from Indiana I think. It's quite an honor to win it, but most kids who win it have a near perfect gpa....the award focuses more on academic achievements than athletic. I guess there is a really nice dinner with a good speaker that Andrew will be invited to attend. Regardless of if he wins, it is nice that Danny did this for him.

Josh learned to cook French toast this morning. The house is smoky right now! : ) He liked it though. Just one more thing to add to his cooking repertoire. Andrew still can't cook much of anything but today he did prove to me he knows how to run the dryer. (this is not as easy as it sounds in our house--the on/off knob is broken so he has to use pliers to turn the machine on!)

Andrew's dead week(s) are over as basketball tryouts start this week. Josh has another story due for the Niles Daily Star so life stays busy.

Must go finish laundry.


Tuesday, November 11, 2008


WOW. Just when life gets smooth and maybe even mundane, BOOM! Bambi's large overgrown father decides to slam into Molly's car, causing $3200 worth of damage--and get this--three days later the love of my life TOTALS our Suburban.

Yup, Friday night, coming home from my mom's surgery I hit a deer--well actually, it hit me. I couldn't even get out of my car to see the damage--but a man at the gas station that I was able to drive to--said "man, your car is messed up! And you should see all the fur!" So, yesterday, I spend all day on the phone with my insurance company but do get an estimate for fixing it--a nice $3200.

And then tonight, Jim is on his way to job number 2, coaching little 7th graders in basketball, and a truck slams into him in an intersection. The SUV is totaled--he is ok--but somehow, he ended up with the ticket. When he called me to tell me he said that the guy that hit him told him he (jim) ran a red light--honestly, I think he was stunned as all the airbags went off--and then the cop told him that since he wasn't there, and jim wasn't sure what happened jim ends up with the ticket....needless to say, we are going to fight it, as the more Jim reviewed it in his head, he thinks there is no way it happened the way the guy said. The guy also ran to Jim first, saying he was ok, and "the light was red, buddy" to Jim...almost like he was convincing Jim of it. Then, the guy let the ambulance take him away. All Jim worried about was his basketball players. Poor Jim. If you know him, he HATES conflict and is the nicest man on Earth, so he would never argue with anyone...but now he is pretty upset. So. Didn't our day just suck. But thank heavens, he is ok, and so is the other man.

To make matters worse, my mom is really struggling with her surgery. The surgery was supposed to take 2-4 hours and took 5--then when she was in recovery, she was filled with all kinds of fluid and it caused her all kinds of problems that were near life threatening. Once she overcame that obstacle, she was ok for one day, but then started vomiting so much they took her off all liquids (she hadn't even started food yet) and now she has an NG tube to keep emptying her stomach of the bile her gallbladder is sending it. Oh yeh, in the surgery, they found that she has lots of gallstones but her surgeon decided not to take it out as the surgery was already so extensive. So that sucks too. I don't even want to call her because she is so grumpy.

Again, we are all alive but gosh, what a few days it has been. We still have to figure out cars to drive--thank goodness for great family members.

Maybe tomorrow i will have something nice to say.


Thursday, November 6, 2008

Another rare cancer.

My pal Debbie's cousin was DX'd with a rare "phyllode's tumor" breast cancer this week. Very similar to mine in that it is really, really rare and doesn't respond to chemo. "Cure" (and I use that term with hope and reality) is surgery. What is in the water here in Niles? She was diagnosed at Lakeland and for them to diagnose two really rare cancers must have had them talking the the lab! Today was her surgery I think...a lumpectomy so far. I hope all went well.

Jim is at basketball practice for his 7th graders. He is such a good guy. Took work off to get to his game on time but then the game got canceled. Lucky me, he had time to clean the house though!
He could have easily canceled practice but he's such a work horse. Last week a couple of his baseball players from way back at Howard Little league wanted to know when he would start working out with them again...he just loves coaching.

Still have not heard from MSU for Andrew. Nor CMU.

This week and next are "dead weeks" for high school so Andrew actually has some nights off. Josh got a detention today,which he deserved. If I was his teacher he would drive me nuts i think. Talks too much and likes to negotiate everything. But gosh, he sure brings a smile to my face when I see him.

John and Crazy Mil are back in the UP until after Thanksgiving. I will try not to talk so much about my love for the Up this coming season. But I am excited.

tomorrow my mom is having her colostomy reversal...she will be in the hospital for about 5 days. I am going up after lunch tomorrow.

Nice chatting with you--

Saturday, November 1, 2008

Life is going well.

Hi! The sounds of ping pong balls are pinging throughout my house. Jim's buddy Rick is over and Connor, the kid's cousin, plus Kait. Notre Dame football is on, the house is fairly clean and I cleaned the freezer I think for the first time since we owned this freezer. Josh is getting ready to go on a "double date" to the Haunted House. Josh still does not want his driver's license. Isn't that strange? He could have it since he is 16.

The first marking period is over here for the kids and both could have done better...I hate B+'s--I know that sounds strange, but for the most part, my kids don't work that hard and both boys said they could get better grades if they wanted to....arggh. Andrew is just making it in AP Psych. Luckily both kids are still on the honor roll but I wish they would work harder.

Check out this link of the photography studio where Andrew had his pictures taken.

Then go the BLOG and scroll down until you see him.

Andrew did learn he was accepted at Western Michigan University as well as GVSU, but we are still waiting on Central Michigan and Michigan State. Then it is visit time.

Andrew also learned this week that he made All-Conference as a quarterback. He was disappointed that it was only honorable mention but there are two really good quarterbacks in his conference--both going D-1--so I am proud of him.

My mom is having surgery this Friday to reattach her colostomy "stuff." She will be in the hospital for 4 days...I am going to take Friday off I think. I have not missed any school this year and should sit with my dad as he gets pretty nervous about the surgery. My mom's pet/ct were clear-no hot spots so the chemo worked. She is getting stronger everyday.

Debbie F had her implant placed this week and is doing very well. Good for her.

thanks for visiting!..