Happy Birthday to me

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

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

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

Hair and School

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

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

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

"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

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

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

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

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

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

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

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

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

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

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

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

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

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!