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.

Radiation break

2008-03-20T14:45:00.002-04:00

I get a break from radiation today and tomorrow. My radonc doc will look at the troubled skin again on Monday. The only problem with a break is that every treatment I miss gets tacked onto the end. This is a little silly, but I wish I could do a countdown to the end of treatment.

DH took today off work to watch dd's softball game. Unfortunately, the game was canceled due to the field still being underwater from yesterday's rains. We went to a tile shop and a kind of neat thing happened with the estimate. The salesperson asked for our phone number and dh gave her our home phone number and told her that I was home during the day. She made a comment to the effect that she'd like a deal like that. DH said "it goes with the haircut." I was very pleased with him at that moment.

Easter break and radiation annoyance

2008-03-19T22:06:00.003-04:00

Easter break has now officially started in my children's schools, so now we will have some quality time together. Actually, I'll still be running around all over creation, the teenager will sleep in and the 11-yo will get up at 6am to start playing computer games. I spent last weekend helping dd finish her Shakespeare project. Tomorrow, I need to take her to the library to research Grace Hopper for a paper. DD has to do a report on a woman scientist and I suggested RADM Hopper. She was an amazing woman whom I never had the good fortune to meet, but I know many people who knew her. If you don't know anything about this mathematician's contribution to modern computing, wikipedia is a decent place to start. The article seems reasonably accurate except that I thought she was DPMA's first "Man of the Year" in 1961. I'll try to remember to verify that.

I had a break from radiation today. My radonc doc didn't like the look of a raw spot under my arm. She'll look at it again tomorrow. It is hard to keeps ones arm up so that the area can get air to dry out. I suspect that it would be very painful if I still had all of my nerves functioning. I sat at choir practice tonight with the arm propped up on the back of another chair and brought a music stand to use.

This is a busy week for choir. We sing tomorrow night (Holy Thursday), Saturday night (Easter Vigil) and Sunday (Easter). We get a break for Good Friday because the Contemporary Choir does that service. I'm used to cantoring some of these liturgies and having a solo or two. This year is different, not due to my disease, but because we have a few professional musicians carrying that load now. I am happy about singing since I had to miss Christmas with choir.

Papal Mass Choir

2008-02-26T17:08:00.002-05:00

Bummer. I found out today that I didn't make the Papal Mass choir. I'm not terribly surprised, because I did not have a very good audition (2/9). My voice broke across the bridge and my sight reading was horrible. The good news is that my voice and reading are improving as I get further from chemotherapy. I sang at a memorial Mass on Saturday. I was in decent voice and learned two new pieces of music - fun and reassuring!

I can understand why the Archdiocese felt they needed an audition process versus a certain number from each parish, but I suspect the overall composition of the choir will be younger, more attractive, and more professional musicians. I make this observation based on the people who auditioned when I did. This does exclude many of those who have volunteered in parish music for many years and who have supported lesser endeavors such as the "Festival Choir" for the Eucharistic Congress.

Now I have to try to get a ticket to the Mass from my parish. Wish me luck!

Ten treatments down

2008-02-26T16:10:00.008-05:00

Oops! I see I forgot to come back here. Radiation has been pretty uneventful. I saw my radonc today for the second time since my treatments started. She seems pleased that my skin is still only a little pink. The staff is very pleasant and I just discovered that the student technician is cousin to a couple of my former students. My appointment is the same time every day, so I send to see the same people in the waiting room. Most of the patients and SOs driving them are also ready with a smile.

They draw on me every treatment. I wasn't expecting this since they tattooed me. Every other treatment is a bolus to the skin. They do this with a wet towel and bring the radiation field out a little bit so that my skin gets extra zapped.

The only annoying thing through this has been the inability/unwillingness of my HMO's pharmacy to obtain the cream prescribed by my radonc for radiation dermatitis. I will see if they will at least reimburse me for the amount that they would normally cover for non-formulary prescriptions. If they don't, this stuff is still worth the expense.

Ray of Life

2008-02-13T08:46:00.002-05:00

DH jokingly calling my radiation treatments the "ray of death." The kindern think it is funny and I am glad he can be light-hearted sometimes (this has been very hard for him). I leave for my first treatment in a few minutes. I'll let you know how it goes. I am glad that this is something I can drive myself to and from.

Radiation Starting - Good Bone Scan

2008-02-11T17:53:00.000-05:00

I nagged the radiation oncologist's staff in person today. My next trip to the radiation oncologist is tomorrow! This appointment will be a brief re-imaging to validate the treatment plan. The treatments start the following day.

While I was in the building, I picked up a copy of my bone scan report. The most important impression is "No findings to indicate osseous metastasis ..." But, it looks like I have some arthritic type changes in both shoulders and back (L5-S1).

The most interesting impression is of "hyperostosis frontalis." Googling this led me down an interesting trail of syndromes that are pretty trivial compared to cancer. It could explain my balance issues.

Radiation treatment

2008-02-09T22:13:00.000-05:00

I haven't posted anything about my radiation treatment. My CT for setting up the treatment was almost two weeks ago. They said they would contact me in 1-2 weeks for starting treatment. I will call them on Monday. I would like to get this started and over.

The treatment will be daily, five days a week for six and a half weeks. The staff seems very friendly and the radiation oncologist comes highly recommended. I have one friend currently in treatment there and another who is about seven years out from treatment. I trust them to take care of me.

Complementary Medicine

2008-02-05T22:32:00.000-05:00

I saw my Complementary and Alternative Medicine (CAM) doc today. I started seeing her in December and couldn't be more pleased. We primarily work on side effects and fatigue. I keep finding new aches and pains to work on. Balance has also been an issue since I started the last course of chemotherapy (Taxol). Fatigue is definitely getting better (1 hour vs. 3 hour naps).

Today was an acupuncture day. Thank goodness I didn't start snoring like I did at yoga yesterday:) Besides acupuncture, she has prescribed a diet and Chinese herbal medicine. I do feel better. Before cancer, I did not know my health care system has MDs who work in this area. My CAM doc is Family Practice board certified and has an extra graduate degree in Eastern medicine.

Overdue update

2008-02-04T19:09:00.000-05:00

This update is way overdue. The short version ...

I am finished with chemo (1/14) and will start radiation any day. I am trying to get into some sort of fitness routine beforehand. I got very lazy while I was sick at Christmas.

My radiation oncologist is optimistic that I can beat this thing. This does reinforce what my medical oncologist wrote on my disability application, "Prognosis: excellent." It really helps to see these things in writing.

Radiation will be six and a half weeks (every day, M-F).

The best part of today was seeing whymommy at yoga and staying with her for the breast cancer support group at the facility. She is awseome. She had her bilateral mastectomy two weeks ago and she was encouraging me. Visit her blog at http://toddlerplanet.wordpress.com/ .

Good CT scan and shingles

2007-12-26T23:43:00.000-05:00

I had my follow up CT on Monday 12/24. I picked up the report today and everything that was new on the September CT has resolved. Yeah!

Unfortunately, I was also diagnosed with shingles on Monday. I missed singing with choir on Christmas Eve and Christmas day. I feel like I let them down. I was so angry and upset I actually stomped and yelled (when I was home). This delayed my chemo from today until Monday (12/31). I have been cleared to see Spamalot on Sunday.

About shingles: I had this weird rash in two places on my back for a couple of days before I saw my primary care doc. Neither benedryl nor hydrocortisone cream helped the itch. I didn't figure out what it was until I had dh take a picture of it so I could get a good look. Fortunately, I didn't have the pain that can go with shingles.

I am going stir crazy. I spent last week getting over a cold and now this. I will be a good girl and stay away from people for three more days.

First Taxol and September CT scan

2007-11-28T22:36:00.000-05:00

I had my first Taxol treatment today. Arrival to departure was 5 hours! They gave it to me very slowly after the pretreatments to check for allergic reactions. After the benedryl, I dozed off. I was aware of about half of the times my onc nurse stepped up the infusion. A couple of times I wondered if I was reacting (face flushing). By the time I was ready to call my onc nurse over, it stopped. I think I was hot flashing. Overall, it was not as bad as I was afraid of. I brought a bunch of diversions with me, but I was content to nap and talk to my friend who drove me. I was hyper enough to go to choir practice tonight! We’ll see how the rest of the week goes.

My oncologist spent a few minutes discussing my September CT scan with me. We won’t know what it is (in my right lung) unless it is biopsied. If he sent me to a pulmonary specialist right now, we’d have to delay the chemotherapy. I agreed with the decision to go ahead with the Taxol and let this sleeping dog lie until I’m finished with the Taxol (as long as I don’t have any symptoms). He told me that he had not brought it up because it was ambiguous, if cancer I’d still do the chemo, and that I had enough to worry about. He told me all of this in the sweetest way with short words. So yes, there is some paternalism going on there. I can deal with that. I’ll ask more questions!

Cary Elwes and Sean Bean

2007-11-24T22:38:00.000-05:00

I've actually not thought about cancer a few hours the last two evenings. We watched The Princess Bride last night and Robin Hood: Men in Tights tonight. Did Cary Elwes do anything else significant? I see a few things I recognize. Such a pretty face.

I haven't been one for watching television or DVDs lately. I should re-view the Sharpe's television series with Sean Bean. Now there's a distraction :)

Thanksgiving and Taxol

2007-11-23T23:03:00.000-05:00

My in-laws have been here for Thanksgiving. They are wonderful and a lot of help. I think they are going home tomorrow. I hope that the traffic isn't too terrible. They were caught on the wrong side of an interstate-closing accident coming here on Tuesday. The drive is becoming more difficult for them.

On Monday I discovered some comments in my medical records concerning my Sept. CT scan that were not exactly "unremarkable." My surgeon downplayed it and I will talk to my onc about it Wednesday. I am a little concerned that my onc didn't want to talk about on the phone. I am wondering whether it really is nothing until the follow-up scan in December, my docs are being paternalistic, or it was something that slipped between the cracks. It could be a little bit of each. I don't see how this would have changed any treatment decisions, so no harm done (other than the need for a little more xanax :)

At any rate, I start an every two week taxol regimen for four treatments on Wednesday. I am a little worried about the risk for nerve damage since I already have a little with carpal tunnel syndrome. On the other hand, I really want to wallop this cancer so hard it can't think about coming back.

Daring to hope

2007-11-12T22:16:00.000-05:00

My oncologist was really, really positive today.

I knew that the pathology after my mastectomy showed no cancer. I didn't dare to hope that this might mean the cancer elsewhere in my body had likewise been knocked out. My oncologist today told me to dare to hope and he intends to treat me as if I can be cured. I like getting rid of the word "palliative" for right now. I start Taxol after the surgeon releases me. We discussed other Taxane based regimens, but this is the one he can put me through the fastest (4 treatments - 1 every 2 weeks).

I am still stunned. I was becoming reconciled to being on chemo the rest of my life and maybe this is not going to be the case. I know there are no guarantees, but I am feeling happy, happy, happy.

I know that many people have been praying for me and this is the best possible news. I feel a lot like the day I joined the Church - walking a foot above the ground.

What next?

2007-11-11T18:42:00.000-05:00

This last week has been good. I returned to some of my regular activities including working out, quiz bowl and choir. I still have to periodically get fluid drained from my wound and I am on an antibiotic for infection. I see my surgeon again tomorrow and my oncologist.

I am getting hyper about seeing the oncologist. I wonder does he have a plan; is he going to do another PET scan? I'm putting a lot of emphasis on a 15-minute appointment. I haven't seen him since August 31. Will he even remember me? I sound like a girl with a crush :) I think it is going to be an ambien night.

I have three options at this point:

1) radiation - to what I'm not sure (nodes, chest wall?)
2) more chemo
3) watch and wait

I had an interesting conversation with my surgeon on Wednesday. In part, he apologized that I had to keep coming in to the office to deal with the fluid build-up. I replied that I didn't mind and it was just something that had to be done. He said I was "too accepting." He meant about the whole cancer experience. I just don't see the benefit in spending a lot of energy shouting into the storm. I have better things to spend my energy and time on. Maybe he is used to seeing cancer patients in hysterics. On the other hand, maybe I am too accepting. I don't have a lot of questions for him. I just thought of a question! What is a reasonable amount of time for this infection and fluid build-up to resolve?

I have come to love my surgeon through all of this.

Reality check

2007-11-05T17:36:00.000-05:00

I spent some quality time at the hospital this morning. When I woke up at 2 this morning I noticed dampness around one of my drain incisions. Once I figured out that it was pus (eow, yuck), I called the 24 hr. advice line. I was to go to the emergency room. I wasn't running a fever and my white counts were not up, but but a chest CT showed the build up of fluid. They gave me a course of antibiotics and wanted to admit me.

The ER doc caught up with my surgeon around 6:30am. My surgeon directed me to come see him at his office. He drew off about 70cc of fluid with this big needle syringe. This was in addition to the fairly substantial amount that did make it to the drain. The good thing about this visit is he pulled both drains - one needed to come out and the other one obviously wasn't working. I'll see him again on Wednesday. Maybe he'll start removing staples. I'm almost positive I'll see another syringe.

I knew before this morning that everything wasn't right on that side. I just wanted to make it to Monday when my surgeon could see it. I had been in to the practice a couple of times the previous week, but my symptoms were not overt enough. My surgeon was away and I think his colleagues were reluctant to make decisions concerning someone else's patient. Culture results should start coming in tomorrow and then he can make a decision regarding antibiotics.

I finally get to take a shower tomorrow! Sponge bathing, bird baths are getting old. I resumed driving last week and made the trip to my school on Saturday to help dd set up for open house. I think that I will try to resume choir this week.

The ER this morning was a bit of a reality check. Coming to the ER on a more frequent basis than before (never since childhood) is probably part of my new normal, until I enter hospice. My daughter had to help her brother get ready for school this morning and make his lunch - probably part of her new normal. I am doing very well right now and don't anticipate a lot of these trips in the near future, but I think I've had a glimpse of things to come. When I think about the big picture of metastatic cancer, I am at peace with it. The details scare me.

Time to rest on my faith and your prayers.

More on the surgery

2007-10-29T18:41:00.000-04:00

I left off with my Wednesday morning visit from my surgeon. The only thing I have to add about this is an observation that the first time you see someone at 6am you are likely learn something new about that person. This is when I discovered that my surgeon drinks diet coke too.

It took a little while to escape the hospital on Wednesday, but I was home by 10:30am. We let the kids stay home from school. We are all such introverts that we usually scatter to different rooms in the house. This day was no exception. Everyone did poke their head in regularly and I was content to rest.

Other than no Internet access at my house. The next few days were unremarkable. The highlight of my week was going to ds' soccer playoff game on Sunday afternoon.

Saturday, my surgeon called with the pathology on the breast tissue - no residual cancer! There isn't any better report. It seems that the chemo worked!

I will see my oncologist 11/12 and we will decided what comes next.

Tempus fugit!

2007-10-28T11:07:00.000-04:00

Wow! I've blinked and it is Sunday. Our Internet was finally restored yesterday afternoon. My one and only outing for the day will be ds' soccer playoff game this afternoon. They haven't practiced since Tuesday due to the rain. I hope the other team hasn't practiced either.

The recovery from surgery has been about what I expected. I am more sore than having acute pain - nothing ibuprofen can't handle. I am more tired than I expected. I pooped out on my mom at the grocery store yesterday - hence my decision to marshal my energy for the game this afternoon.

About the surgery (10/23):
The pre-op stuff was a little boring, but the flocks of baby docs walking around were a little amusing (teaching hospital). I got to lay around with an IV in my arm pumping fluids into me. They rolled me into surgery and I moved from the gurney to the table. Next thing I remember was the recovery area.

They brought in my family (dh, mom, sil) who told me that my surgeon had a good report after surgery. The breast tissue looked normal and he did not have to cut anything we had not planned. My surgeon then shared that I was feeling well enough after surgery to move myself back to the gurney. I don't remember this.

I had to wait for a hospital room. Since it was getting too close to my kid's bedtime, the recovery room staff allowed them to visit me there (usually no one under 16). They seemed relieved that I was OK and my mom took them home. I ended up in a private room ca. 9-10pm. DH returned home after I was settled in and had my CPAP machine set up and my cell phone and iPod in easy reach.

I dozed on and off all night. There were the normal hospital interruptions, e.g. vital sign monitoring. I was still receiving fluid by IV, so I had to go to the bathroom all night. Unfortunately, I had to call for assistance every time since I was wearing these air pressure massage thingies on my lower legs that had to be disconnected and connected every trip. I also indulged my guilty pleasure, Grey's Anatomy. I had the current episode on my iPod and needed to catch up.

My surgeon popped in at 6am, peeked at my incisions, and gave me a surgery report similar to what he had told my family the previous evening. He didn't tell me about hopping on to the gurney. He asked me if I remembered anything after the surgery before I got to recovery - I did not. He then told me that I was laughing while they were putting on the mastectomy bra.

More, later ...

Surgery is done!!

2007-10-25T13:23:00.000-04:00

The surgery (simple bilateral mastectomy) went well. I walked into the hospital at 11am on Tuesday and walked out at 10:30 am Wednesday. There were not any surprises. I'm just taking a some ibuprofen for soreness and I feel well.

DH has been wonderful, but it is still a blessing for my mother to be here. This 46yo woman wants her mommy sometimes.

I am posting this from the library, I hope to have the Internet back up at home some time tomorrow and I can post a couple of funny things that happened.

The pilgrimage

2007-10-19T08:32:00.001-04:00

I forgot to post about the Archdiocesan pilgrimage to the Basilica on Sunday (10/14). I had never been to one before, so it was all new. Our choir provided the choral music for the Mass. The Basilica was full and it was really neat to sing in a space like that. The pieces that I most liked were Sub Tuum Praesidium (Rice) and Ubi Caritas (Durufle). I think we sang well. Our pastor, Monsignor, was pleased.

One of the highlights for me was seeing our former pastor. He seemed a little preoccupied, so I didn't bother him. This did remind me that I want to take a field trip to his new parish before he retires.

I thought this was funny. I wore my wig instead of a scarf since it was a relatively cool day. Most of the choir hasn't seen me with it and some did not recognize me at first.

Foot in Mouth? Helping Hands.

2007-10-19T08:00:00.000-04:00

One of my email support groups recently discussed the things people say to women with metastatic breast cancer. Much of this discussion centered on blaming the victim, e.g. "God must be punishing you" or "didn't you get your mammograms?" The flip side of this discussion was "what gifts have you received that you've most appreciated during your cancer experience?" By and large, the most appreciated gifts were those of specific service, e.g. "can I bring dinner on Wednesday night" or "can I help with laundry on Monday" or "can I take you out for coffee on Tuesday?"

Similarly, MSNBC recently published Coeli Carr's feature Clumsy remarks come along with breast cancer: Patients get an earful of unsolicited advice, but would prefer a helping hand. This is good reading for anyone with a friend or family member facing a serious illness. This article does a pretty good job of explaining why specific offers are better than general ones.

As I face surgery on Tuesday (10/23) I guess I better get my "help me to do" list together. I've tried to keep a file of offers of help to call on when needed (Kathy M. or I might be calling). Chemo made me tired. I think this is going to be different - harder in the short term, easier in the long. We will find out.

Surgery despite fears

2007-10-09T11:00:00.000-04:00

I had my pre-op appointment with my surgeon yesterday. Since 10/4, I had convinced myself he would tell me again that he didn't want to operate. This was due to some things that I did not understand on the 9/19 MRI. He fooled me! My surgeon was humming while he did the clinical exam and then asked me if I had any questions about the surgery. I had a few choice phrases rehearsed and I didn't need them. I felt like a mute, bubble-headed idiot. It's a good thing DH had the list of MRI and surgery questions.

I am still nervous being this far out since my last chemo (8/31). My oncologist is OK with it and I want to/need to trust him. It's not like I don't have other things to be doing. It is too easy to obsess with this disease. I am neglecting my spiritual health and need to get back to basics: prayer, rosary, Mass and confession. It is easier to maintain a balanced perspective when I look at God and not myself. A balanced perspective makes me a nicer person to be around for my family and everyone else.

That was my self-help, pep-talk for the day. Now to do something about it!

10/23 Surgery

2007-10-04T08:24:00.000-04:00

Couldn't get 10/16, but we definitely have 10/23 for surgery. I'm a little nervous since this is quite a bit out from my last chemo date (8/31). At any rate, I'll message my oncologist so he is aware.

It is hard to do nothing. At every twinge I imagine that the cancer is coming back too quickly for the surgery or anything else. It is easy to think too much and get scared when you are not actively treating your cancer. I'm having trouble generating healing vibes at the moment. Please help me with them.

I received the MRI report from 9/19. In reading it, I realized I never saw the first one in June. At the time I was too focused on the PET scan to ask about it. I can infer from the MRI report that the breasts look much better than in June. I'm not so sure about the axilla. I'll have to get one of the docs to explain it to me.

We had a great choir practice last night. It truly keeps me going.

Surgery 10/16, maybe

2007-10-02T09:00:00.001-04:00

Tuesday, October 16 is my tentative surgery date. I will confirm this on 10/9. I'm looking at bi-lateral simple mastectomy. The docs and I have agreed that there is not any value added in taking the lymph nodes in my case. I'm excited and anxious and I don't know how many other mixed feelings I have about this. I'll probably only be in the hospital 24 hours and it will be the hospital closest to my home.

What else is going on? My CT scans on 9/17 were "unremarkable." I put that in the "no news is good news" category. On top of every thing else, I had an abnormal Pap smear in August and I had the follow-up colposcopy and biopsies yesterday. I have been down this road two other times in the last nine years, so I'm not as freaked out as you might expect. Besides, how bad can it be? I already have cancer.

Non-medical news: The first week of the high school quiz bowl season could have been better. The turn out at the practices were promising. Only two students could make it to Sunday's tournament, so I canceled our team's participation. I'm hoping for better on a 10/13 tournament with the longer lead time.

Choir is still fun. Our director previews some of the more difficult pieces with a smaller group, the motet choir. Last week we looked at Faure's "Cantique de Jean Racine." By the time of the evening we started working on it I couldn't keep a pitch in my head (embarrassing). I've been practicing the piece along with my French in order to not repeat my mistakes. I took one year of French thirty years ago and have sung very little in the language. The choir as a whole is still working up music for Mass at the Basilica on 10/14. We are finally learning to watch our director which will be beyond critical in that location.

Oops! I got so distracted with music I almost forgot to publish this post :)

Tough couple of weeks, but getting better

2007-09-24T13:18:00.000-04:00

Wow! I just realized what has had me in funk the last couple of weeks. Someone said something hurtful to me and I couldn't let it go. Now that I've figured it out, I think I can get over it. I'm glad I started thinking about it. I've had very little energy lately and I was chalking it up to the disease or treatment. That may be some of it, but I think my depression is more of the answer.

I really hope to find out when my surgery is this week. I had CT scans and an MRI last week, so I figure if they look good they'll schedule the surgery. If they don't look good, I'll be getting a call to come see a doctor or have more scans. Yes, I'm anxious, which has been the icing on my emotional cake for the last few days.

There now, I've worked out (Curves) and vented. I feel much better. If only the darn phone would ring!

To distract me, the high school quiz bowl tournament season is beginning. I am coaching the team at the school where I had been teaching and the first practice is on Wednesday and the first tournament on Sunday. I can't think of a more enjoyable way to spend quality time with my daughter and earn family service hours.

Six down, surgery and more to go

2007-09-16T22:04:00.000-04:00

School is definitely a challenge. I am so thankful that my in-laws were here the first week in September while we are adjusting to me not working and the kids in school in two different counties.

My sixth A/C treatment was 8/31 and I am still tiring very easily. I'm happy to have a chemo break. I met with my surgeon on Mon., 9/10 and he was still reluctant to do the surgery. He made a big point of reminding me that it would not be curative. Of course, this isn't anything that I haven't known since July. After he contacted my oncologist, he called me back on Wednesday morning to tell me he was putting in the paperwork for a bilateral mastectomy and that it would be in about a month. I will put my dibs in for no earlier than 10/15, since I really, really want to sing with my choir at the Basilica on 10/14. At some point there will be radiation and more chemo. I am guessing the next sets of scans will tell which and when. I better get used to the IBC roller coaster.

To liven things up just a little bit more, I need to get the quiz bowl team going at my daughter's high school (where I taught the last six years). The first tournament is 9/30! Several students told me Friday, when I was out there, that they were interested. Yeah!

Hope

2007-08-28T17:04:00.000-04:00

I ran across this Emily Dickinson poem today:

Hope

Hope is the thing with feathers
That perches in the soul,
And sings the tune--without the words,
And never stops at all,

And sweetest in the gale is heard;
And sore must be the storm
That could abash the little bird
That kept so many warm.

I've heard it in the chillest land,
And on the strangest sea;
Yet, never, in extremity,
It asked a crumb of me.

I had not realized how long it has been since I posted.

I am on an emotional roller coaster. School is starting and I'm not teaching :( I am very excited about the appointment with my surgeon on 9/10. I can't imagine it not being positive. I think about my prognosis and know that it is an educated guess. This disease is so varied in its forms and how it works in our bodies. How the treatments work for each of us is just as varied. Our doctors are trained in science, but so much of medicine seems art to me.

Despite my depression, I like to be a glass is half full kind of gal. That seems weird doesn't it? I have hope. I do not necessarily hope for a cure, but I have a certainty that life is worth the trouble of the trip. We will all die one day. I just have a pretty good idea what I will die of, unless I get hit by a bus tomorrow. I have hope that the journey will continue to be a good one - every day lovely in its essence . The journey is worth the effort.

Good news

2007-08-10T16:16:00.000-04:00

I saw my oncologist today (8/10). He is so pleased with my response to treatment that he is almost ready to declare "complete response" to treatment. Since my heart scan was good, I am going to do one more A/C treatment next week. I will schedule the sixth, but see him first (I may not need it!). He wants me to see the surgeon earlier than we had planned, so I will do that on Sept. 10.

It is amazing the difference a few weeks can make. Not long ago my oncologist and surgeon were preparing me for the worst. Laudat: 6/29 mtg w/onc, second chemo: "6/29 mtg w/onc, second chemo"

Thank you for your prayers.

Visit the Sick

2007-08-09T08:06:00.000-04:00

It has been an interesting week so far - not really like the Chinese curse. I went to school on Tuesday and spent some quality time in the business office working on disability paperwork. Believe it or not, it looks like the school's long term disability is better than what I can receive through Social Security. Who'd a thunk it? I was also able to visit with several people. The principal again made it crystal clear that she wants me back. I feel like Sally Field at the Oscars - "you like me!"

I had lunch with a couple of colleagues yesterday - very nice. We were able to talk for almost 3 hours. Everyone has been so good to me. I try to count my blessings. This time would certainly be horrible without everyone's support.

I am beginning to understand in a very personal way the words of Jesus in Mt 25:34

“Then the King will say to those at his right hand, ’Come, O blessed of my Father, inherit the kingdom prepared for you from the foundation of the world; for I was hungry and you gave me food, I was thirsty and you gave me drink, I was a stranger and you welcomed me, I was naked and you clothed me, I was sick and you visited me, I was in prison and you came to me.’ Then the righteous will answer him, ’Lord, when did we see thee hungry and feed thee, or thirsty and give thee drink?’ And the king will answer them, ’Truly, I say to you, as you did it to one of the least of my brethren, you did it to me.’”

Visit the sick. It is a simple thing; so simple that it is easy to forget. How many times have I let the responsibilities, cares and minutiae of the day distract me from this simple Christian action? I have failed too many times. It is not difficult to pick up the phone and call even if I cannot physically visit - yet I do not. I need to think about this with gratitude for the visits, phone calls, emails and cards that I have received.

God is good - all the time!

Feeling the feelings - anger

2007-08-04T06:37:00.000-04:00

It is time to revisit feeling the feelings. I have finally started to feel the anger this week. I don't think it is a why me anger. I am angry at what this disease is changing in my life (and maybe not changing?).

Tuesday was the nadir of my energy level after Friday's 4th chemo. Family staying at a hotel did the monument tourist thing and took my children with them. It was nice to be able to rest and not worry about the kids jelly braining in front of the TV or computer except:

My department head contacts me to pickup the teacher editions of my textbooks. My replacement is signing her contract on Wednesday.
I was looking forward to the return of the tourists. I had such a nice time with them the prior evening. Unfortunately, they were so exhausted they headed straight to their hotel after dropping my kids. I didn't see them again. I was so disappointed, then angry. I know - pitiful.

I spent most of Wednesday being bitchy. I can't say if I was trying to pick fights with DH all day, but I certainly wasn't putting up with any BS. At any rate, I was over the bitchiness and pitifuls by Thursday.

What am I angry about?

I am angry at feeling tired.
I am angry at people who try to make me doubt my treatment team.
I am angry at people who don't understand that this is not normal breast cancer and tell me not to worry. Get educated on IBC.
Please let me decide what I have the energy for. I might make the wrong decision, but I am learning how to say no. I am learning how to pace myself. I eventually learn from my mistakes. Please call. Please visit.
I love teaching and I know I don't have the energy for it this year with treatments, etc. This is a real loss and I hope a temporary one.
I don't have the energy to make my kids take on the responsibilities around the home that I should have had them do all along.
I can't give my children a to do list and expect that anything will be completed. To give them credit, they can usually complete one discreet task at a time given verbal direction.
I am letting them get away with it.
I don't want to have to tell DH what I want all the time. He should know! This is probably not reasonable, but I am writing about feelings.
more later?

Goodness. I see an I in every statement above. I hope that now I have sufficiently acknowledged the anger and that I can move beyond it. I certainly know that I am not perfect and that my guilt has also fed these feelings.

2 hours later - I really do feel better now!

Edible Arrangement

2007-07-28T18:32:00.000-04:00

Look at this beautiful edible arrangement that we received today. DH and I love the fresh fruit. I had to take the picture before we demolished it.

Thank you, Aunt H. and family!

Chemo #4 Update

2007-07-28T10:24:00.000-04:00

Well, I saw the oncologist and had my fourth chemo yesterday. The oncologist was very happy with my progress on the current cocktail. Other than faint pinkness, the left breast looks back to normal. So, I'm off to another heart scan this week to see if I can tolerate one to two more rounds of it. I didn't ask him how close I am to the lifetime dose of Adriamycin. This flexibility is one of the nice things about being "off protocol."

Another nice thing is having more options with the treatment schedule. I'm going to wait three weeks for my next treatment (whatever it is) so we can take the kids to the Tut exhibit at the Franklin Institute. This will also set me up for being more high energy at dd's birthday celebration later in the month.

I wish this wasn't such a fascinating puzzle sometimes. I can listen to continuing medical education podcasts and read abstracts almost all day. I don't think that I am obsessing. I can walk away - really I can :) There is so much to learn or at least become familiar with.

Power Lunch

2007-07-21T22:37:00.000-04:00

I went to a lovely lunch today with a group of ladies who all have metastatic breast cancer. We lunched in Annapolis. Several ladies live in Annapolis, but a couple came from as far away as Hagerstown.

I was the youngest person there, but not the most newly diagnosed. This is an awesome and inspiring group of ladies. They help feed my hope that I can live as well and for as long.

Tough Decision

2007-07-17T11:45:00.000-04:00

I finally decided to go on disability and not teach next year. This has been the saddest thing of all so far. It is a very public acknowledgment of the status of my disease and what I need to do to take care of myself and my family.

I love where I teach and I plan to still be involved as a mom and I hope to return there when we get this thing to NO EVIDENCE OF DISEASE (NED). I have every confidence that my colleagues will continue to give me the support that they are now. I especially need them to watch out for my incoming freshman.

This is what is finally getting me to tears, but this is what I need to do.

How did your faith help you through this early stage of the journey?

2007-07-13T22:31:00.000-04:00

From "Fighting Cancer With the Help of Your Catholic Faith"
the first milepost - Feeling the Feelings

I receive a great deal of comfort from my faith. I can honestly plan for the worst, yet hope and pray for the best. I can ensure that my will is up-to-date (duh, needed to do that anyway), yet pray for a miracle and believe in miracles.

Some of the tools in the toolbox of my faith include:

Sacrament of Anointing of the sick
Sacrament of Reconciliation a lot more often
Getting to daily Mass when I can (I was attracted to the Eucharist a long time before I converted)
Praying the rosary daily
Singing psalms, hymns and choral pieces I know from choir (I just look funny with my Ipod)
More things not in my brain at the moment
Repeat as needed

The good news is ...

2007-07-13T21:58:00.000-04:00

Today it is official – the surgeon has pronounced that this cancer is currently not resectable (he can't cut it all out) and the oncologist has acknowledged this. I knew I was balancing on the edge there. I am actually relieved. Now I have a lot more control over my treatment without fighting my insurance provider about drugs that have not been FDA approved for first-line chemotherapy treatment of breast cancer.

I have my fourth AC treatment in two weeks. After that, I will probably have a taxane of some type for 4 more treatments (no change there, but now I can get Abraxane instead of Taxol). I will still see the surgeon in about three months and he will re-evaluate. I have not lost any options.

My oncologist told me (I made him :) that women in my position have an average time of survival (may not be the correct technical term) of three years. I made it clear that I understood the problem with “averages.” We discussed that it is very likely that my outcome will better this a great deal (5–10+ years), since I am young (46), relatively healthy, currently responding very well to treatment and there is no EVIDENCE of this cancer in other major organ systems (just all those hot lymph nodes and both breasts).

I know that I should get another opinion and probably will. I honestly don’t feel that anyone of good repute will tell me anything differently. I’ve seen the scans. I know how I feel. I’m thinking that the time for more opinions will come when it is time for radiation and hopefully surgery.

This has been an emotional week. I needed to get all of this out there and speak plainly with my oncologist. NOW we have a relationship that I can trust in. I think he was going to hug me today, but I already had my hand out for the handshake – next time.

DH and I have a lot of decisions to make now. At any rate, we have agreed on time frames to use for our planning. If I beat them, that is a wonderful problem to have. I am not planning on taking all of my retirement money to Monte Carlo.

Pray for us.

As you learned about your treatment, what were your greatest fears?

2007-07-11T04:54:00.000-04:00

From "Fighting Cancer With the Help of Your Catholic Faith"
the first milepost - Feeling the Feelings

Part of my answer for the question How did you feel when you learned you were diagnosed with cancer was
"Afraid - Afraid of the unknown. Afraid of treatment. Afraid for my family. Afraid of abandoning my daughter who will be a freshman where I teach. Her grade school friends will go elsewhere."

My greatest treatment fears are:

chemo brain - I get distracted enough already without this.
neuropathy - I am clumsy enough already.
the effects of steroid pre-treatment - I am fat enough already. My blood sugar is already too high.

I am very worried about my family. My husband has his own health issues. My daughter is about to start high school. My sweet son is ADHD and two out of three clinicians thinks he also has Aspergers syndrome.

Great description of all the testing

2007-07-07T14:17:00.000-04:00

Whymommy who was recently diagnosed with IBC has a great blog entry describing all the testing that she has gone through:
http://toddlerplanet.wordpress.com/2007/07/07/testing-testing/

I am so glad that my testing experiences went much more smoothly. The only glitch I had was that my MRI was scheduled at the location where the radiologist was not. An urgent MRI should have been scheduled at the other location. Someone was kind enough to drive my images across county so the radiologist could see them that day. God bless the kindness of strangers.

New cancer industry propaganda?

2007-07-07T13:47:00.000-04:00

Google Alerts sent me a link to a forum post that I just found incredible.

http://www.psywarriormatrix.com/viewtopic.php?p=15946 refers.

I can't figure out which kind of wacko this woman is. She makes reference to the viral emails that focus on inflammatory breast cancer (IBC) and KOMO's coverage of it. I received one of those emails last year. That's why when my doctor said "I don't like this dimpling of the skin" I knew he wanted to rule out IBC.

I've looked around this Web site some more and the whole group has a very different perspective on the world. I don't think anyone is going to take Karen's post seriously that isn't already a weirdo. And I thought I was strange.

Rethinking the last appointment with the oncologist

2007-07-05T20:08:00.000-04:00

I am making the mistake of trying to get in the head of my oncologist.

I think Dr. H feels in his gut that this is not going to go well, hence his comment of 6/29 that the surgeon might tell me that my cancer is not resectable. He is trying to prepare me for the worse. If that is what he feels, it is the right thing to do. I can't waste my time and energy chasing a cure that isn't there. I need to praise God with my life and my love. I need to make sure my family is ready. We need to love each other.

What a contrast with the appointment of 6/6 where he said "you are going to be mine for a long time." I could hold on to this when I was panicking. Of course, we have much more information now. The cancer has spread to the other breast. It looks like a lymph node in my back is involved. So it is out of the breast and axilla. The horse is out of the barn. My other organ systems appear clear, but I think he is waiting for the other shoe to drop as regards metastases. The cancer is hormone receptor negative and HER-2 negative. This limits my systemic treatment options.

On the other hand, I might be thinking way too much. Intelligence and imagination can be a curse as well as a blessing.

How did you feel when you were first diagnosed with cancer?

2007-07-05T19:18:00.000-04:00

From "Fighting Cancer With the Help of Your Catholic Faith"
the first milepost - Feeling the Feelings

How did I feel?

I was shocked. I was afraid. I felt GUILTY.

Shocked - Hearing the doctor say "cancer" was still difficult. I knew they were trying to rule out inflammatory breast cancer (IBC). I knew it was likely to be IBC. I received the news by phone when I was home alone. DH and I were expecting the biopsy results before the weekend and it wasn't in when we went to the MD's office. I didn't know I would be so physically shaken up - like I was punched. I knew I would not be able to drive myself to graduation that afternoon. My school ended up being the first to know after my husband.

Afraid - Afraid of the unknown. Afraid of treatment. Afraid for my family. Afraid of abandoning my daughter who will be a freshman where I teach. Her grade school friends will go elsewhere.

Guilty - As I was going through the whole diagnostic process in May, I was also just coming out of my seasonal affective disorder (SAD). I describe it as the winter of my despair. I was still feeling world weary. I remember thinking, if this cancer, maybe I am ready to go. This also seems a little juvenile to me. I remember in high school (a long time ago) when I was mad at my parents thinking "they'd be sorry if anything happened to me."

Fighting Cancer with the Help of Your Catholic Faith

2007-07-05T18:55:00.000-04:00

A friend brought me this small book a few days ago and I've started working my way through it. It is organized around "mileposts" of the journey with the disease. The author is a BC survivor, but she has journeyed with people who have not. The mileposts are:

Feeling the Feelings
Asking the Ultimate Questions
Facing Your Own Death
Dealing with Other People
Giving Up Control
Discovering New Ways to Pray
Dealing with Pain
Overcoming Temptations
Reaching Out
Finding Inner Peace

Each section has a few questions to contemplate. I've found myself writing in this already. I will probably share some of my thoughts.

Fighting Cancer With the Help of Your Catholic Faith

Hair

2007-07-03T08:56:00.000-04:00

Took ds to 8am Mass this morning. His fidgeting, etc. distracted me more than it usually does. I think that we will not sit in the front next time.

The rest of the hair on my scalp is really coming out now and my scalp is sensitive. I'll have to try to not shed all over Curves.

Curves was great. I walked out with a lot more energy than I walked in with. Made a pizza with ds when I got home. Now that I've eaten too much healthy chicken and rice, I'm about ready to rest again.

Did more research. I mixed up positive and negative margins for surgery ... oops. I think if only my platelet level is low, they can juice me up as part of the chemo infusion and not mess up my treatment schedule. I will confirm. I am concerned about this because I've always been a bit on the lower end of normal. Nothing severe.

I have got to get out of my own head and away from this disease. This is just so new and intense and I feel like I have figure it all out right now. I need my music or a good paranormal romance. Maybe now would be a good time to work my school stuff for next year. Something to think about ...

Looking forward to coffee with friends this evening.

The blessings of family

2007-07-02T22:19:00.000-04:00

In my blogging gap I neglected to write about visits and events with my family last week. It was wonderful and I will add more to this post later.

Thursday, June 28, was an awesome day for my younger brother's family. He was promoted to Colonel and his oldest son had his Eagle Scout ceremony that evening. This was the impetus to getting most of us nearby.

Tuesday (6/26) - My mother and my 87yo grandmother arrive from Florida/Alabama. They will stay with me this week. I talked with my mommy all afternoon and most of Wednesday. Yes, this 46yo woman wanted her mommy.

Wednesday (6/27) - Got my labs and picked up meds for Friday's chemo. Spontaneously stopped at Hair Cuttery to shorten the hair. Had a great workout at Curves. Noticed my hair coming out in the shower. Went to the wig shop, Sandee cut the rest of my hair and finished fitting THE WIG. My hair probably would of made it through Thursday, but I wasn't ready to wake up with it on my pillow. DD accompanied me to take before and after pictures on her new camera phone. Everyone seems cool with the GI Jane look except maybe ds.

Thursday (6/28) - Off to the Pentagon for baby bro's promotion. Mom was driving. Thank you! The ceremony was very nice (I hate it when my students use that word). The wig didn't make me too crazy (until later). I looked good and felt good. During our tour afterwards, I was left behind in 9/11 chapel and had to catch up. I gave the seaman who was supposed to not let that happen a very slight ration of sh**. Mom drove us down to my brother's home in Woodbridge where we also visited with my SIL's family - great people. I got to rest all I wanted which I needed by that point. The wig came off as soon as I hit the car (93 degrees) and stayed off until Eagle Scout time that night. Funny moment - the resident Jack Russell Terrier did not like my wig sitting on the form at all. The Eagle Scout ceremony was a little different than usual. My nephew's paperwork had just come in so it was quickly put together for the benefit of the family. I even got to read the invocation. Straight home to Silver Spring - thank you mom!

Friday (6/29) - I already posted about my appointment with the oncologist. Mom sat with me in the infusion center. She has to have her iron refilled every so often, so her opinion of the look/feel of the place compared to her experience was important to me and ultimately reassuring to her.

Saturday (6/30) - Mom, Grandmom and dd depart for points south. They will pick up my brother's youngest son as well. The 13yos did no damage to each other and are now in Orlando doing the tourist thing with my brother and his wife. DD will return Sunday.

I love my family and I don't see them as often as I should - especially my brother's family. We're in Silver Spring. They're in Woodbridge. It seems like the ocean instead of the Potomac River sometimes.

All in all - a great week.

Surgeon appointment is much better

2007-07-02T22:04:00.000-04:00

Well, I was right about the surgeon. I'll see him again in about three months. He is also pleased with how I am responding to chemo. I will next discuss with the oncologist the possibility of radiation before surgery. Surgeons like to cut, but prefer negative margins :)

The surgeon and I lost my husband in the medical babble. So dh stopped us and the surgeon did a little show and tell with my breasts right there. It was actually quite funny and greatly increased dh's understanding.

I totally confused my calendar today. I told a friend that today would be great to visit. I told her Monday, but my fuzzy brain remembered Tuesday. I wrote Tuesday on my calendar, because I knew I had appointments today. She's a good friend. I am forgiven.

I also saw my counselor today. She thinks my attitude is good and that I have a good support system. She wants to see me again in two weeks anyway :)

DH is beginning to understand how I am pacing myself. I do something I want to or need to do then rest. Repeat as necessary. I'll have more energy by the end of the week.

We are both getting into the spirit of not putting everything off. Unfortunately, another PROJECT arrived today - the unfinished table for the family room. I think we're (dh actually) just putting poly on it, so it should be brief. I really hope so. I want to have fun - whine. The family needs to have fun.

Good news - dh's parents are coming Thursday until Monday. They are always a pleasure.

6/29 mtg w/onc, second chemo

2007-07-01T20:02:00.000-04:00

Friday's meeting with the oncologist wasn't great. The lymphatic involvement is extensive enough that he alerted me to the possibility that the surgeon may not want to do the surgery. Another piece of news that he didn't have during my appointment but shared in the infusion center when he received it is that the cancer in the right breast looks like the cancer in the left breast pathologically. I have an appointment with the surgeon on Monday (one month follow-up with him). We'll hear what he has to say.

The good news is the cancer is responding well to Adriomycin/Cytoxin. I look better and feel better than I did I did at my last appt.

I realize that I have lots of options based on how I continue to respond to systemic therapy and I should get more opinions. Other than the cancer, I'm very healthy :) We'll see how Monday with the surgeon goes.

I'm scared, but but writing this down also helps.

No PET results

2007-07-01T19:59:00.000-04:00

June 12th, 2007

They didn’t call me today with my PET results. I’ll bug the oncologist’s office in the morning after my CT scans. I looked at the image series yesterday and have decided not to panic

Busy day today. The MR guided biopsy of the right breast was today. The radiologist said she would call me with pathology results before the end of the week. If this one is cancerous too, is my disease officially metastatic?

Icing on the cake - my cell phone died and that is the number I’ve given out. I’ll change my greeting to add my other numbers.

I’ll probably add to this post after this t-storm rolls though …

I’m back. Picked up a new cell phone. The trip also involved full catcher’s gear for daughter and dinner with the family. Glad dh was driving or it wouldn’t get done.

I realized that I missed giving the PET and CT results. The onc didn't really want to share on the phone. I was expecting bad news. He thought he was giving it. He didn't want to tell me about extensive lymphatic involvement. I was happy to hear that no other major organ systems were involved. I'm a big girl. I'd rather know than imagine things being even worse than they are. That's the problem with intelligence and imagination - one uses them.

A big week

2007-07-01T18:48:00.000-04:00

June 11th, 2007

Off to a PET scan this morning to see if this thing has spread. I am excited about getting more complete information on what I am fighting.

Our end of season choir party was yesterday. I had an interesting exchange of comments with a friend yesterday whose daughter lost her fight with IBC (last year I think). She commented that I have my faith, where her daughter did not. There was one particularly surreal moment - very strange.

One cannot have too many versions of Psalm 23 on their ipod.

I’m not pregnant!

2007-07-01T18:42:00.000-04:00

June 10th, 2007

Here is copy of an email that I sent out on Thursday, June 7:

Sent: Thursday, June 07, 2007 12:08 AM
Subject: I’m not pregnant!

OK, silly subject line, but a pregnancy test was one of the many things ordered by the oncologist today (June 6).

They are still not sure how far this Inflammatory Breast Cancer has spread. Next week I have PET and CT scans scheduled and a biopsy of the other breast. I start chemotherapy on Fri., June 15. I am waiting to wake up.

The current treatment plan is
* chemo every two weeks for sixteen weeks
* one month rest
* mastectomy
* one month to heal
* radiation and then more chemo (I think)

Of course, this is all subject to change as we see how things are going and how healthy I stay.

I’ve begun filling in the calendar so folks can get an idea what is going
on: http://calendar.yahoo.com/connellytc

I’ll be adding camps for the kids and such as we schedule them. DH is planning on taking the chemo days off work and holding my hand. I am setting up a Peapod or Safeway grocery delivery every week for the basics.

Needs:
Workout buddy (Silver Spring East Curves anyone?)
NWB pool people to take DS to the pool when they go
play dates for DS
keep DD busy
help organize desk, files, and paperwork (or at least cheer me on)
keep me from hibernating (withdrawing is one of my symptoms of depression and I can’t afford to do it now)

Several folks have mentioned meal assistance. This is a very hard thing for me to ask for and I don’t know why. DS subsists on peanut butter sandwiches, apples, cheese pizza, chicken nuggets and rice. DD’s palate is expanding and she will try new things. Unfortunately , there
is very little that DH and I don’t like. The oncologist says I have to be VERY careful about my blood sugar and not gaining any more weight. I do like healthy foods. Any ideas are welcome.

Kathy M is next door and she has volunteered to do any coordinating that is necessary. Kathy has been too close to this kind of thing too many times, so she has more of a clue than I do.

I know that many, many are praying for us. This is the greatest comfort of them all and I sincerely thank you. Feel free to share this information with whomever you wish.

I am resting on your prayers.

Beginning the Journal and the Journey

2007-07-01T18:40:00.000-04:00

June 10th, 2007

I was diagnosed with inflammatory breast cancer on 5/29/2007. Life has been a blur since then.

My students are wonderful. On 5/30, I told them that I had a serious health condition and needed their prayers. They were very concerned and asked me what it was. I told them I wasn’t ready to talk about it. I didn’t want to totally freak them out the day before exams.

I wish I had started this journal sooner. I need to put this in my daily schedule. Ha! I need a daily schedule (a keeper more like it).
One thing I am afraid of: this cancer has distant metastases (should find out this week)

One thing that I am thankful for: the prayers of friends, acquaintances and strangers.

Here I go again

2007-07-01T18:33:00.000-04:00

I'm attempting to blog again in a place less tied to my public persona. My husband and teenager were really down on that. I need to respect that.

Laudat means she praises (in my case) .