My Breast Cancer Journal
March 19-25

Sunday, March 19, 2000

I've been out most of the day. Got to church early to practice with the band, then went out to lunch after, and then to Home Depot for the final touches on the new garage door opener. It was a little hard to get through one of the songs in church. I was fine in rehearsal, but before we sang it during the service, Rhonda (the pastor's wife) got up and talked about how people can look fine, but inside they are hurting and we need to pray for everyone we meet. That really got to me and I cried through the next song. People were so kind. Alexis reached over and held my hand as we sang, Uriah squeezed my shoulder afterwards. These are very loving people. The really big excitement today was that Rick got baptized! This is proof that God answers prayer! So I haven't gotten much of anything done today. I still have some reading to do before we meet with the surgeon tomorrow.
posted by Karen Weber Sunday, March 19, 2000

Monday, March 20, 2000

Well, life is sure funny. You'd think a surgeon would recommend the more extensive surgery and a radiologist would recommend the conservative approach (breast conservation surgery and radiation treatment). But not in my case. The surgeon feels that he can do a partial mastectomy and take out plenty of tissue around the tumors to provide safe margins given my breast size. He thinks that with radiation afterwards (and any other treatment that would seem warranted based on further evaluation of the tumor tissue and the lymph nodes following surgery) I still have a very high chance of successfully beating the beasties. He did not feel my chances of recurrence would be significantly higher with this approach. We came home confused. I've spent a couple hours reading abstracts at PubMed, and I've found some literature that reads both ways. Most of the problems with multifocal disease comes with tumors that are distinctly separate. Mine are so close to each other, it's really just an educated guess as to whether there are two of them at all. It seems in a few recent studies that this would indicate a good result with the conservative approach. So we've decided, that's what we're going to do. I've set up the surgery for this Wednesday. I'll spend a long time tomorrow over doing pre-op stuff and seeing the surgeon again. Then we have to be at the hospital early on Wednesday morning. I'll be in overnight. Mom is coming down to stay with me for however long I need her. I hope it won't be too long.
posted by Karen Weber Monday, March 20, 2000

My mother thinks that some people might misinterpret the last couple sentences of my last entry. I am not meaning to say that I hope she won't be here for long because she is annoying. Au contraire! I love having her here. I just know that she goes into withdrawal without her sewing machine / computer set up. And I hope that the surgery is easy and recovery is easy and I won't need her to be here. That's all I meant - really!

Mom just called to say that she is bringing a couple new bras for me - soft, front-fastening - that she thinks will be more comfortable than the usual bra (and easier to get into). She's also bringing some soft lounging nighties for me. She is a good mom!

I called UofA about a second opinion. They are getting 25-30 new patients a day and couldn't schedule me until the end of April. I wouldn't want to wait that long for a second opinion, so I'm glad we made the decision to do the surgery this week.
posted by Karen Weber Monday, March 20, 2000

Tuesday, March 21, 2000

Just got back from the pre-op visit. They did all the health insurance stuff, took some blood and some urine, a couple chest X-rays and some reassurance. I will be seeing the surgeon again this afternoon for a final looksee before we go ahead. There is a big winter storm over northern Arizona, so there is the chance that mom and dad might get started late tomorrow due to snow.

I think I am having hot flashes today. it is chilly outside, but I'm in a sleeveless shirt and shorts. The folks at the hospital said they were cold just looking at me. Even my eyelids were sweating. So my menopausal symptoms (I call them my door prizes) have shown up just in time for the rest of the fun. I'm going to grab some lunch and head back up to the surgeon's office.
posted by Karen Weber Tuesday, March 21, 2000

Back at the surgeon's office. He was late seeing me because of a long meeting or surgery or something. He never lets you feel like he feels rushed. He did a physical exam, went over the blood tests, did another ultrasound to look at the beasties, and then we looked at the mammogram and ultrasound films again. He showed me where he would make the incisions - one at about 4 o'clock on the breast and another in the armpit for the lymph glands. I'll go back on Friday to have the drain removed and we should probably have the staging results on the tissue they remove tomorrow. This all went so slow for weeks on end, and now it seems to be moving along quite nicely. I have the luxury of an appointment with a massage therapist tonight and that will hopefully help me relax enough to get a good night's sleep.
posted by Karen Weber Tuesday, March 21, 2000

Thursday, March 23, 2000

Now, you didn't think I'd come to the hospital without my laptop, didja? Surgery went well yesterday. They found it was just one tumor after all, just shaped funny. And the doctor says that my immune system was fighting really hard against the beastie. It had it encapsulated and was standing firm against it. The preliminary path report has the word "medullary" in it. They tell me this is a subset of ductal carcinoma and that it's a good subset to have (if you insist on having one). I haven't done any research on it yet.

I haven't had any nausea, pain has been minimal, and my only real complaint is that I haven't been allowed to eat anything but popsicles and jello. Some people calling themselves my family had the nerve to eat McDonald's in front of me. The french fry smell was torture. Plus there is a small box of chocolate sitting here that Mary Lou (my mom's wonderful neighbor) sent down. I have resisted temptation so far...

I brought some relaxing music and let it play all night. I slept well, except when the nurses came in for shots/vitals. All in all, this wasn't too bad. I should be released today.
posted by Karen Weber Thursday, March 23, 2000

Wowee! Just did some quick research on medullary carcinoma and it is encouraging. It is less aggressive in terms of metastasis and, if caught at stage 1, less likely to recur. We think we caught it at stage 1 - should know by Friday. This is GREAT news! I'm jazzed! Here are a couple of links: Types of breast cancer and PDQ (treatment guidelines).

The intern and resident have been by to see me. As long as I eat breakfast and don't have any nausea, I can go home. I'm so hungry I can't believe I'll have any problems with it.
posted by Karen Weber Thursday, March 23, 2000

I'm home! Didn't even stay long enough to eat lunch. Breakfast consisted of bacon that had been cooked within an inch of becoming leather alongside some really tasty eggs and a flakey biscuit. The doctor stopped by with the resident and intern to change my dressings and rewrap my chest. I got a taste of the loss of modesty that will come with radiation therapy. There I sat, naked from the waist up, in a room full of people whose first names I don't even know while they examined my breast and armpit. It's a very odd feeling. By the time this is done, I'll be ready for the topless beaches in France. Anyway, we came home and sent mom out to pick up some bar-b-q at the Gecko Grill. Then we let her take a nap :-) I came home with some pain medication, but I haven't needed any yet. I expect I'll take some tonight if I have trouble getting comfortable enough to sleep. We've sent Rick in to work and given him permission to go to his bowling league tonight.
posted by Karen Weber Thursday, March 23, 2000

Friday, March 24, 2000

Just got back from the doctor's. We had hoped to have the pathology report, but it's apparently stuck at the typist. The surgeon is working tomorrow and says he'll call me with the results. We are most anxious to hear about the lymph nodes. He took out the bulb drain -- I can't tell you how much better I felt almost instantly. I'm also wearing a bra instead of two very big ace wraps. I don't look quite so much like a mummy now, and it's easier to move my arm. The surgeon went over the rules for preventing lymphedema - no blood pressure or blood draws in that arm, no sleeping on that arm (which of course is how I usually sleep), keep it elevated when sitting, do exercises to prevent swelling, etc. These rules are for life. It would be easy to resent them, but I am going to make a conscious effort to consider them as a reminder of how lucky I am that we found the beastie so early.

The surgeon made the comment yesterday as he was rewrapping me that the hard part (the surgery) is over. To be honest, the surgery never struck me as the hard part. It's the total life changes that I need to make now that are the "hard" part. But they will also be the most rewarding part. I need to get out of my workaholic habits and start spending more time on nurturing my mind, spirit, and body. Working at home makes it very hard for a workaholic to find balance. The work is always right there, calling out to me. It's hard to relax and do something that's non-productive when there is so many items on the to do list. When I used to work for the school district, the teachers had something called uninterruptable time. It was in their contracts and that schedule was inviolable. I need to schedule uninterrupable time for myself - for exercise, for play, for prayer, and for cooking nutritious meals. Yes, leaving the To Do list on my desk, closing the office door, and honoring my commitment to balance is going to be the real "hard" part for me.
posted by Karen Weber Friday, March 24, 2000

Yippeee! Just got a call from the surgeon with the results of the lymph node biopsy. No cancer cells! YEAH!
posted by Karen Weber Friday, March 24, 2000

Saturday, March 25, 2000

Slept last night in a real bed without pain meds! And Rick helped me shampoo and shower today. I feel like a whole new person. Dad stopped by on his way to the Renaissance Festival with his Little Brother, so now he knows the news about the lymph node tests. I'm walking around more today. I had some bleeding last night from the hole where the drain was inserted, but that seems to have stopped. I have squeezie thing I'm using with my left hand to keep the swelling down. It's a soft foam thing in the shape of a hockey puck we got as a free gift at a Phoenix Coyotes game. It's called a stress puck and it's really a good size and resistance for me right now. Rick had the good idea to get this out for me. I'm also using a small, soft pillow that my mom made for me. I've got it propped under my elbow so the arm doesn't hang down. I don't want anything that will rub on the elbow. I spend so much time on the computer that I tend to have a callous on that elbow all the time. It gets dry and peels. We can't have that any more. So I'll be trying to figure out ways I can avoid rubbing that elbow and also keeping it moisturized more frequently. Here is some more information on lymphedema from OncoLink.

posted by Karen Weber Saturday, March 25, 2000

NEXT: March 26 - April 1