Laudat

2009-03-05T12:29:00.001-05:00

A new dog is a wonderful thing. If this pic from my phone comes thru, let me introduce you to Sherlock.
He is a 13 month dacshund/lab mix.

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Life is good.

2009-02-23T12:19:00.004-05:00

I have been feeling great since mid-January. I have more energy and a little bit better focus. My January scans, tests and onc. visit were totally uneventful. I'd been getting to Curves about four days a week, but a new family member has tied me down a bit.

We adopted Sherlock last Thursday. He is a dachshund / lab mix and is a year old. He is housebroken, but not crate trained (yet). He is a wonderfully sweet dog and I am enjoying getting to know him.

New Year Update

2009-01-04T13:28:00.003-05:00

Wow, I have not posted in a long time. I guess that I have been too busy living. I know that I have not been on the computer and Internet nearly as much as I had been. I am still NED (no evidence of disease) and have a follow-up CT later this month. Lingering treatment side-effects include fatigue, occasional weakness on my right side and more than occasional cognitive issues.

I sometimes have a difficult time with living. I had not realized how much I was getting ready to die. Living can be harder.

I certainly don't have much time to sit around and think about it. My children and mom-taxi duties keep me busy; along with choir and activities at the Wellness Community. I sometimes substitute at the high school and continue to moderate the quiz bowl team.

If I sub for two days in a row, I'm blown the rest of the week. I think it is a valid yardstick with which to measure myself and my readiness to return to work.

I look forward to 2009 as a year to become more comfortable with where I am now. I want to choose something outside of myself to focus on and choose something to develop within myself. Above all I choose to be thankful this year and behave with grace and gratitude.

Greece Photos

2008-08-18T18:01:00.001-04:00

I finally uploaded photos of our trip. Here is a little preview.

@ OTAKON today It is

2008-08-09T09:42:00.001-04:00

@ OTAKON today
It is fun watching the fans in their anime costumes.

More $$$ for IBC research

2008-08-08T16:36:00.002-04:00

American Airlines and Komen team up to fund IBC research.

http://www.chron.com/disp/story.mpl/ap/tx/5932483.html

Delos and Mykonos

2008-07-22T13:37:00.002-04:00

We went to Delos and Mykonos today. Wished we had more time in Delos. Maybe next time.

Sent from Naxos Greece

2008-07-21T12:51:00.001-04:00

We're here!

On television for Jesus

2008-07-10T22:50:00.004-04:00

I just returned home from the Basilica this evening. Our choir did two tapings of Mass for Shut-Ins. It was a lot of fun and we did not make too many mistakes. The tapings were for the Masses of August 3 and August 17. The Mass is aired on WHUT (8am) in Washington, as well as in St. Louis and Indianapolis. If you care, I am the second woman from the right - short, short hair and round. I found out that it is a lot more difficult to stand for 28.5 minutes than it used to be.

The tapings were in the Crypt Church. If you are not familiar with the Basilica of the National Shrine of the Immaculate Conception, check it out - www.nationalshrine.com .

Still dancing with NED

2008-07-10T22:33:00.003-04:00

The verdict is in - there is still No Evidence of Disease in my body. My CT and labs were unremarkable, as was the physical exam. My onc got two hugs yesterday. It's early yet, but I am becoming a little more used to the idea that I might not die of my breast cancer.

I had two things to report to the onc. I still have balance issues. I forgot to mention this until I almost fell down in front of him in the exam room. I have also had some soreness under my left arm (the IBC side). I connected this to bad posture at my computer when gaming and he agreed after the physical exam. He also thought it was a good thing I was playing - I had not done so since last year. No more hunching over mouse intensive games for me.

A time for tears

2008-07-07T17:42:00.003-04:00

Andrea passed away on Saturday. I know she entered hospice in June, but I was hoping she would have a little more time with her children. Please take some time to read this amazing woman's blog and pray for her family. http://punkrockmommy.org/blog/ refers.

I think this is only the fourth time I've cried since my diagnosis. I need to cry more often, but don't want this kind of reason.

The rest of the story ...

2008-07-01T07:48:00.002-04:00

I'm back on the Internet and not text msg from my phone.

About the fireworks:
My brother was being very careful with directing the kids and the fireworks. A car stopped on the other side of the divided highway. The driver complemented us on the fireworks and said they were going to pull off and watch some more and they did so. A few more roman candles, bottle rockets, spinners and firecrackers later they came back and pulled onto the edge of the driveway. At that point, the blue lights in the rear window of the car came on and we realized they were the police in an unmarked car! They told us about the complaint and that they thought we were not out-of-bounds. In fact, when the complaint came in they had been enjoying the show from the police station.

I posted earlier that my grandmother owned the home that the complaint came from. The other funny thing is that she was the police commissioner in the 1970s.

The next door neighbor complained

2008-06-29T22:36:00.001-04:00

The next door neighbor complained the fw were going in her yard. THe funny thing is - my grandmother is her landlord.

The police just came to

2008-06-29T22:28:00.001-04:00

The police just came to my grandmother's house. My brother and all our kids were lighting off fireworks in the driveway.

Florala, Alabama is a little

2008-06-28T16:41:00.001-04:00

Florala, Alabama is a little town where US 331 crosses the Florida / Alabama line. I have been here for a few days with my children.

Joy

2008-06-18T18:22:00.003-04:00

Another month has gone by and school is out for summer! I have three posts sitting on my son's AlphaSmart. I'll have to see if any of them are still relevant.

A question at "group" on Monday
"What gives you joy?"

A year ago, I would have unhesitatingly said "singing." Now I'm not so sure. I spent all of last summer having chemo or recovering from it. This was punctuated with a few visits from friends. I didn't take a lot of joy in my children - maybe I was too worried about whether they were going to have a mommy for very much longer and couldn't face it. I am very happy about being with them this summer, even the times when two of us are on a computer and the third on the Wii. I need to work on getting all of us outside.

Happy Birthday to me

2008-05-15T22:20:00.001-04:00

I am in the same place that increasing numbers (thank God) of Inflammatory Breast Cancer (IBC) patients find themselves – I am grateful for my birthday and what it represents in terms of a disease with very poor prognosis. Does it get any worse than metastatic, triple-negative Inflammatory Breast Cancer? What does this mean?

Metastatic means that the cancer has spread beyond the primary site and regional lymph nodes. Mean survival time from diagnosis is 2.5 to 3 years.

Triple-negative means the cancer is estrogen receptor negative, progesterone receptor negative, and HER-2neu receptor negative. This matters because hormonal and anti-HER2 therapies wont hurt the cancer. Chemotherapy is the only systemic option.

IBC is a beast of an aggressive breast cancer. The numbers are getting better, the five-year survival rate for IBC that is NOT metastatic is somewhere on the continuum between 30% and 60%. This depends on whose study and how old it is. The numbers seem to be trending better these days.

In my favor: I am relatively young (47), relatively healthy (my only other significant health issue is my obesity) and the cancer was not detectable in any major organs. Additional points in my favor since diagnosis – I responded well to chemotherapy (pathological complete response) and I’ve reduced my BMI from something over 40 to 33. Thank you Curves and the Eat Right for Your Type (blood type) diet.

Bottom line: I am thankful for this birthday and the survival it symbolizes.
I reflect on November when my medical oncologist told me to “dare to hope.” Hope that I could be disease free for a long time. It is reassuring to remember that last July he was recommending that I go on disability and spend my time doing the things I wanted to do. In April, I asked his opinion on going back to work full-time, part-time, or no time. He responded, “What are you going to do? Stay at home all day waiting for something that might not come for a long time?” This is from the guy who talked me into going on disability in the first place.

It is difficult to look forward more than six months at a time, but I am trying. I found it infinitely reassuring that someone else in my situation took about three years to get beyond waiting for the other shoe to drop. I can only try.

Happy Mother's Day

2008-05-10T22:53:00.002-04:00

I was fooling around with something for Grandmom. Anyway, here's what my Mother's Day is all about.

Make a Smilebox free ecard

I fight like a girl

2008-05-10T12:08:00.002-04:00

I found this very cool shirt at JINX.com. DD wants it, but I want it too. What do you think?

Hair and School

2008-05-09T15:00:00.007-04:00

I was looking at some pictures on a friend's blog today when I realized I haven't updated my picture. I had fun playing with my camera and Paint Shop Pro and now have a pic with hair. Wait, that reads like I drew in hair. The fuzz is all mine!

It looks like I am not going to have a salaried position at my school for next year. I will be on the paid substitute list. This will give me the freedom to accept or reject assignments based on how well I feel. This is probably for the best, but I still have mixed feelings about it.

Today was the seniors' last day of classes. They were very disappointed that they were not going to be allowed to have a prank day, like previous classes. I did notice, when I dropped off my daughter this morning, that they had dressed up the statue of Mother Seton in front of the school in a student uniform and holding an umbrella. I hope someone got a picture of her.

It was quiet

2008-04-26T16:23:00.001-04:00

I find myself in a strange position this afternoon. It's a weekend and my house is empty. The guys are scout camping and dear daughter is working on a service project. I tried to nap. I could hear the sirens on US 29. So much for that. Now I'm off to cantor the five o'clock mass, and there's no one here to complain about it.

I should be careful what I wish for.

Washington DC Papal Mass

2008-04-17T20:36:00.002-04:00

I am glad that I went to the Mass. Things seemed very well organized. Eucharist was no trouble. The only hassle was the shuttle bus back to RFK. The logistics overall were OK.

The music was a hodgepodge of ethnic/multicultural shtick. I was expecting this for the hour and a half before the liturgy, but this carried over into the Mass. I do enjoy many different forms of music, but the Mass seemed very disjointed to me.

Placido Domingo sang Frank's Panis Angelicus and the choir did the echo on verse two. This made me smile because that used to be one of my solo pieces at St. John Neumann. Unfortunately, a large number of people CLAPPED after it was finished - made me shudder. I am an ugly American, but I do know better than that. Il Papa got up to thank him and that was a nice moment.

On a personal level: before Mass I was still feeling a little envious of the people who made it into the Papal Mass choir. Once Mass started, I was fine and that was a great relief. I need to reflect on this experience a little more.

No Evidence of Disease

2008-04-15T14:01:00.002-04:00

"No Evidence of Disease" My oncologist did not use these exact words today, but he might has well have. Three months after finishing chemo and four days after finishing radiation he said everything looks good and he'll see me in three months. He was not against my going back to work and I am excited. Maybe I can embrace being well.

I think I will call the principal at my school and see what the needs look like for next year. I heard that the young lady hired for my position this year wants to stay in CIT. That might actually leave room for one part-time employee in the department. I can also teach in other departments. CIT is just the easiest for me (besides Latin).

I stopped by the rectory this afternoon to pick up my Papal Mass ticket (I forgot to post about this on Friday) and I asked the secretary to take my name off of the sick list. I can step out on faith.

Almost finished

2008-04-08T20:36:00.002-04:00

I had a radiation holiday all of last week while my skin was healing again. It still looks like h***, but it feels a lot better. When I started back on Monday, I determined that I had five treatments remaining. I'm finished on Friday! My radonc and everyone else at the radiotherapy center are lovely people, but I wouldn't mind never going back there again as a patient.

I seem to have done everything backwards. I sailed through chemo, had a little trouble with surgery and had quite a bit of trouble with the radiation. The course of this disease and its treatment (and side effects) is certainly different for everyone. My 3 month follow up with my onc is next week. We'll see what he's got to say. It should be "see you in three months" unless there is something off on my lab work. Then I will consider myself NED - no evidence of disease.

Holiday with kids and friends

2008-03-26T11:00:00.003-04:00

This has been a nice week. The kids are home which greatly reduces the mom taxi requirements and since my colleagues are also on vacation I get to see some of them too.

I'm back into the radiation routine. My friend Sally M. has driven me every morning this week. I can drive myself, but it is so nice having someone to talk to and not having to look over my right shoulder while driving.

Dd has several school projects to work on. She gets an award if a pre-determined amount is done before Friday. I want to take her out to do something special. I'm thinking a movie and a moderate shopping spree at the book store.