Saturday 4/28/2007

Short Story: Feeling pretty good. A little dry mouth, and some queasiness, but other than that OK. Took a 3 hour nap this afternoon, mainly because I went to a lecture on Chinese Embroidery and then to lunch with my chapter members so I got a little tired, but it was worth it!

Long Story

How I'm feeling: Have a slight dry mouth, and I'm "aware" of my stomach, but the nausea drugs are working well. Took a three hour nap today, so I'm not tired.

Hair: Tom shaved my head last night. I was so tired of having hair down my neck! He left a "fringe" around my face and my sideburns. He thinks it looks funny - and it does - when I'm around the house "naked", but when I wear a hat or a scarf, I don't look totally bald. In beard speak, it's a "chin strap", so I guess I have a "head strap"! For those of you are familiar with Gus Weill, a Louisiana political advisor, he sports a "chin strap". Not that I relish the idea of being compared to Gus Weill, but he is the most famous person I know that has a chin strap. An interesting visual, I think. Link to a photo of Gus for those who don't know who he is. http://tinyurl.com/29b3sn

Any-who, not having hair does has it's advantages, it takes much less time in the shower, it also saves on shampoo and conditioner. However, it makes blending makeup at the hairline an interesting exercise.

Shawn with a "head strap".

Embroiderers' Guild: Our Region Director, Linda Ferguson, came to today's meeting. She gave us a lecture about Chinese Embroidery. Everything from two sided embroidery to chain stitch, to techniques involving horse tail hair! She went to China in 2006 and brought many samples of her work. It was very interesting.

First Row (left to right): Jann, Dawn, Pat, South Central Region Director EGA Linda Ferguson, Mary, and Judy.
Back Row: Jeanne, Ann (partially hidden), Jane, Dee, and Shawn

On Table: Samples of Traditional Chinese Embroidery.

Friday, 4/27/07

Executive Summary: Got my second round of chemo this afternoon. I finished around 4:15. Still feeling pretty good, at 8:45 pm.

The Nitty Gritty Details: Chemo went fine. Still peed red. Actually more of an apricot color. They gave me a prescription for a shot of Neulasta it is to be administered 24 hours after chemo. It is supposed to stimulate the growth of white blood cells. So the "second week slump" that I experienced last time should be prevented. My friend Dawn is going to give me the shot as she frequently gives herself allergy shots. Tom volunteered, but since he's never given anyone a shot before, I declined. Besides, I'd rather be angry at Dawn for a botched job than at Tom! I can send Dawn home, Tom I have to live with!! :-) Our normal pharmacy, the Sav-On in Albertsons, did not have the drug, so they called around to find it for us. Fortunately, it was found nearby at the Walgreen's at Coursey and Sherwood. Sav-On told us that since it costs $3,500 PER SHOT, they don't stock it on a regular basis. But they can order it for me for next time. Oh? My cost??? $0.00. Sweet huh???

Thoughts on Hair: My hair is shedding worse than a hairy dog or cat. It is EVERYWHERE! When I finish this post, I'm going to get Tom to shave it for me. I had to wear a turban so I could cook dinner and eat! I was afraid little hairs would be falling in.

The Bathroom Remodel: The shower has been framed in and the holes in the sheetrock have been fixed. We are now ready for the tile man to come. He is supposed to show up Monday morning.

The ceiling of the shower has been created.

The hole where the old medicine cabinet was has been fixed.

Wednesday, 4/25/07

Short Story: Still feeling pretty good. A little tired however. My hair is falling out all over the place. I'd estimate it's about half gone. I went for my physical therapy evaluation Tuesday and more blood work today.

More details for those of you who have to know everything!

Hair: You know how when you get a hair cut there are these little hairs all over you? That's what's happening to me. I can't wait for it to finish falling out. This is a real pain!

Cancer Fit and Physical Therapy: Yesterday, I went to my second Cancer Fit session. The topic was Exercising for Life, then we did 45 minutes of yoga. That same day, I went for my evaluation for physical therapy. They measured my arms for lymphoedema, and had me do a bunch of baseline exercises. One of the exercises was to see how many times I could stand and sit in a chair in 30 seconds. I probably could have done more if my knees weren't creaking so much! I'll go twice a week for therapy.

Dreams: My friend Ann L. sent me the following email. It's a hoot!

"I dreamed about us last night. We were at a party and you had on a hat! Someone said something about your hat and you said "Well, if you don't likethis, how about this?" and with that you pulled off your hat and there was long blond shiny hair. Then you said "Well, if you don't like this, how about this?"and you pulled off the blond hair and there was red hair. Then you said "Well, if you don't like this, how about this?" and you pulled off the red hair and there was brown hair slightly askew on your head! I woke myself up laughing, but went right back to sleep."

Tom: Tom is feeling alot better. He was able to bowl last night.

Next treatment: My next treatment is this Friday afternoon. Hopefully, I'll feel like I did last time - not too bad.

The bathroom remodel: Things are progressing. The plumbing is in on the shower and the electric lines have been run. The contractor is supposed to come tomorrow to put up the sheetrock in the shower in preparation for the tile guy to come next week.

Friday, 4/20/07

Short Story: Got my hair cut today. See pictures below. A little tired, but other than that, fine. My white blood counts are low, so they've prescribed an antibiotic and I'll need a shot after my next treatment. Tom got his staples out yesterday.

The TMI section
Hair: As you can see, I got my hair cut today. It was starting to fall out. When I put gel on this morning there was several strands of hair wrapped around my fingers. Also, there was quit a bit in the shower drain. Which I'm glad about. I wouldn't want to get it shaved if it would stay for a longer period of time! The cut is more of a Sinead O'Connor than a Britney. Wendy used a "1" on the clippers. Tom played the part of paparazzi.


This is me and Wendy, my stylist, before the cut.
Wendy in action. It's almost done.
Me with my hat. It has a scarf tied around it, but you can't see it from this angle....

It feels funny when I'm outside and the wind blows. Like my hair is moving, but there is no hair to move!

Blood work: My white count is low. Maybe that is why I'm tired... It also means I am more susceptible to infections. I need to wash my hands before eating, etc. Which I do anyway, I'll just be more vigilant. Because of this, they have prescribed an antibiotic and I'll need to get a shot to stimulate the production of white blood cells the day after my treatment. I am scheduled to have my treatment on Friday 4/27. They say I can have the shot at home. Any volunteers???

Tom: Tom got his staples out yesterday. His incision is about 3 inches long. We were both surprised at how long it was. He continues to use the ace bandage as a "reminder" that he has had the surgery. The doctor said he can do anything he wants to do (bowling and golf is Tom's main concern) as long as it doesn't hurt.

The Bathroom remodel: Things are going well. The shower is framed out, the electrician has run all of the wiring and the plumber is supposed to finish on Monday. The tile guy is on vacation next week, so he will come the week after. The cabinetry has been put in. Like many remodels, they did exactly what we asked for, but it's not what we wanted. We filled in the knee hole in the cabinet with drawers. I wanted two more, but they added three more. Thus, they were not deep enough for what I wanted. So it's our first, and I'm sure not last, do-over.

Tuesday, April 17, 2007

Short Story: Still feeling good. I've had enough energy to take my morning walks. Tom is also doing well. His wrist itches, which is a sign of healing, so that is good. He is having problems writing with his left hand, but is making do.

The Details:

Blood Work: My blood work came back "fine". I'm not sure what the numbers are however. Go back for more blood Thursday.

Hair: I made an appointment to get my hair shaved Friday 4/20. Wendy has been my stylist for about 15 years. She always asks me what style I want. I just tell her to keep it out of my eyes. She gets frustrated with me because I never give her any direction. Well, I made my appointment, I told her I had seen a style in a magazine that I wanted.... A Britney Spears! She was very excited to FINALLY get some direction!!

Cancer Fit: Baton Rouge Physical Therapy and Our Lady of the Lake Hospital here in Baton Rouge sponsors a program called Cancer Fit. It is an eight week series of lectures on cancer/fitness and yoga. I went today. The topic was Boosting Bones & Muscling Metabolism. We then did about 45 minutes of yoga. This was the first time I did yoga. It was an interesting experience.

Bathroom Remodel: We decided to remodel our master bathroom. We figured it was a good time since I'm stuck at home for so long I could be here for the contractors. We have moved to the upstairs guest room. It took us two days to move especially since Tom was one handed! This experience has made me realize two things (1) our closet holds A LOT of stuff and (2) it was full! Demolition on the bathroom started yesterday. The contractors came at 7 am and were done by noon. Where can I get a job like that??? No wonder it takes them so long to get things done!

Here are the before pics of the bath:

Here are the "after" pictures of the bath:

Thursday, 4/12/07

Short Story: Had a good day today. Had enough energy to take my morning walk, no nap and for the first time, no nausea meds! Things are going well.

Tom: Tom is recovering nicely from his surgery. He went in around 12:30 and we were home by 3:00. He is taking his pain meds, but he did not need a nap this afternoon! Wish I could do the same after surgery!

Wednesday, 4/12/07

Short Story: Feeling MUCHO better. Finally got my strength back. Went all day without having to lie down. What a relief! Only took one nausea pill today - more insurance than need. My mom and I went to Total Woman Boutique today. It's a shop in town that caters to cancer patients. I got fixed up with headbands, turbans and hats. God knows I have plenty of scarves! So I'll be ready in the next week or so when my hair falls out.

More on hair: Many of you are asking how I feel about my hair falling out. Not sure what I'll feel when it happens, but as of now, I'm OK with it. As you know, I'm very pragmatic, so it's going to happen whether I want it to or not. Nothing I can do about it. So may as well slap a blonde wig on and get on with life! Besides, I spend about 3 minutes a day on my hair. I'll probably spend more time on a head covering than my "real" hair! Trey says that "Ms. Wendy {our hairstylist} is getting the shaft over this." That's because he gets a haircut about twice a year, and I won't need one for quite some time!

Vietnamese Nail Salons: The one thing that is bothering me is that I can't wear acrylic nails because of the risk of infection. I've been wearing false nails for years now and I feel naked without them! So I've been buying up OPI nail polish on eBay for those home manicures since I can't get salon manicures either .

For those of you, who have never had the pleasure of going to a Vietnamese Nail Salon, kick it here for a hysterical rendition. http://www.youtube.com/watch?v=SsWrY77o77o.

When I told my nail stylist, "Tammy" (no lie, that's her name) that I needed to get my nails taken off and not put back on, she asked, "Why?”
I proceeded to tell her that I was starting Chemo.
Blank stare.
Chemotherapy?
Blank stare.
Cancer?
"AHHHH ya! Cancer! Where?"
Breast cancer. Eyes dart to chest.
"Boob? But it still there!"

There was no explaining the difference between a lumpectomy and a mastectomy without disrobing, so I left it to her imagination.

Blood work: Went and had my blood drawn today. Apparently they keep track of your blood counts. Guess that's a good thing, but I hate having blood drawn. Should get the results tomorrow.

Tom: Tom goes in for surgery on his right wrist tomorrow at noon. He is getting a ganglion cyst removed. Please keep him in your thoughts and prayers. Nothing is ever dull at the Miller household!

Thanks: To all of my friends and family for everything. The notes, phone calls and emails are wonderful. I am very lucky to have each and every one of you as my friend.

Tuesday, April 10, 2007

Still feeling pretty good. The nausea drugs continue to work as advertised however.

I am really tired however. I was not expecting to feel this wiped out. Up for an hour or so and down for 4. However, last night I went to bed at 10 (instead of 7) and got up at 8!

I also have a metallic taste in my mouth, so I've been using plastic utensils. Seems to work OK.

Waiting to settle into some sort of routine. Hopefully that will happen soon! I have to get blood work each week on Wednesdays to see what my counts are. That will determine if my next treatment proceeds as scheduled or not.

Next treatment is scheduled for 4/27 depending on blood work results.

Saturday 4/7/07

Executive Summary: Still feeling pretty good. The drugs are really keeping the nausea down. The best way to describe it is a slight hangover without the drunk! In the morning I have the shakes, cotton mouth and a mild headache. But if this is as bad as it gets, I'll make it through- I've had worse "real" hangovers!

With a nod to Paul Harvey, "The rest of the story": My mom, Linda W, Dawn and Karen came over today and helped me go though scarves and match them to my outfits. I feel very prepared to loose my hair now. Between my mother and me we have a TON of scarves. I only need to get some hats and headbands then I'm set.

Roberto, I'll take under advisement your suggestion to tattoo a "connect the dots" on my lump scars. I'll post a picture of what I do!

For those of you from out of town, it is COLD here! The low today is the upper 30's! Highs tomorrow in the 50's and RAINING. Which is a far cry from the 80's that we've been experiencing. I guess that's OK, because I wasn't tempted to get out in the yard.

I got fairly tired today. Took a "nap" from 5 pm to 10:30 pm. About to go to bed "for real" soon!

Thanks again for all the food, cards, emails and phone calls. They are all appreciated.

Shawn

Friday 4/6/07

The Executive Summary: Slept pretty well last night. I could tell when the drugs we beginning to wear off, so I would get up and take more. I still have a slight headache - nothing unbearable however. Bottom line, I'm still feeling OK - a little drugged, and "stomach aware" but OK.

The Details for my mother. mother-in-law and all the other hardcore/tell me everything folks:

The drugs I got in my port:

1. Doxorubicin (Adriamycin PFS) An interesting side effect of this drug is that it turns your pee red. As you may remember, my pee turned "tidy bowl" blue after my lumpectomy. So at least I'm peeing patriotic!
2. Cyclophosphamide (Cytoxan)
3. Kytril
4. Decadron

The top two will cause me to lose my hair. They say it takes 2 - 3 weeks after my first treatment. So I may still have my hair on Tom's birthday. (4/16).

The bottom two drugs are to control nausea. I also have the following nausea control drugs to take by mouth:

1. Emend - take this day 1, 2 & 3
2. Decadron - Days 2, 3 & 4
3. Compazine - As needed
4. Ativan - As needed

It is all very confusing, but I made a spreadsheet to keep track of it all. (I know you are shocked!)

Thank god for good insurance! The bottom line for the 2 hours of the treatment drugs was $2,096. I know some of you think of Microsoft as the "evil empire" but they take VERY good card of their employees. My cost?? $0. Yes, you read right. Zero!

Hair coverings

Tom and I went to the wig shop Thursday. (We had about 1/2 hour to kill between getting my port stitches out and going for my treatment.) Had fun trying on wigs of different styles and colors. I tried on a blond wig that really didn't look too bad! For those of you who don't know, I was VERY blond as a child. Again, my insurance is very good and I get $300 for wigs - or cranial prosthesis - as they call them. At that price I could get 2 or three. That way Tom could have 3 wives for the price of one! (I'm sure he'll say one wife is expensive enough!)

Some EGA (Embroiderers' Guild) friends and my Mom are coming over on Saturday to help me go thru my closet and see what types of hair coverings (scarves, hats, etc) that I have before I go shopping.

What was I thinking?

This category is actually from Wednesday, but I've been busy and didn't post. I had three benign cysts taken off of my head. Apparently these are hereditary - Thanks Grandfather Hansen! They've been there for years, and I didn't see a reason to get them removed - except that now that I will be without my hair, I didn't want the bumps showing! (Yea, yea, vain I know... They were pretty big - the size of a large marble.) So I had all three removed at the same time, which wouldn't have been a big deal, except for the following;

1. My port surgery is on my right side near my breast bone. It is difficult for me to sleep on that side.
2. Cyst #1 is on the left side of my head about 2 inches above the ear.
3. Cyst #2 is on the right side of my head above my right eye about 1 inch into the hair line.
4. Cyst #3 is on the back left of my head by the crown on the head.

Your assignment is to find a comfortable position to sleep in. BBBUUUUUZZZZZZZZZZZZ. YOU FAIL! If I sleep on my left, the head hurts. If I sleep on my right, my port hurts, if I sleep on my back, the incision on the back of my head hurts! I told Tom I needed to get one of those hemorrhoid pillows so I could lay on my left side! But it was better last night. Maybe because of the "drugs to make me relax".

Good news is the head is healing, so I can sleep on my left side. And with all of the drugs I'm being pumped with I really don't feel a thing!

Diet:
Holly Clegg and Dr Gerald Miletello (oncologist) have come out with a cookbook "Eating Well Through Cancer". It is organizing in an interesting way. While most cookbooks have appetizers, meats, vegetables, desserts, etc. this one has sections called:

• Day of Chemotherapy
• Neutropenia (low white blood count - don't worry, I didn't know what this was either!)
• Diarrhea
• Constipation
• Sore mouth
• Snacks and light meals
• Caregiver
• Healthy eating post treatment.

Makes for interesting reading.

Once again, thanks for all of your notes, phone calls and offer of assistance.

Shawn

Thursday, 4/5/07

The short story: Had my first treatment. All went well. Feeling pretty OK. Just got back from Outback with Mom, Dad, Trey and Tom. We are about to play a game, so more later! Didn't want y'all to be antsy wondering how I am!

Second chapter: Game over. Still feeling pretty good. Kind of a drugged tired however. Could it be the wine??? Maybe. Nevertheless going to bed. More tomorrow.

Monday 4/2/07

Almost recovered from the port surgery. My bruises are now a wonderful shade of purple and gold. (Didn't help the Lady Tigers last night however....) It also itches like crazy. Yes, I know that is a sign of healing, but it is still annoying.

I went to a "Look Good, Feel Better" seminar today. It is sponsored by the NCI - National Cancer Institute. I highly recommend it to any woman going through cancer treatment. They give you about $250 worth of makeup, booklets, catalogs and other information. A cosmetologist showed us how to put on our makeup. I am gratified to know that I already knew most of the things she showed us. They also did a demo on how to wear hats, scarves and wigs. They were very innovative and gave me lots of ideas! I need to go through my stash of scarves, as well as my Mother's stash to determine what I need. SO, those of you who sew, stand by for scarf duty! :-)

I called my insurance company and found out they will pay $300 for a wig. So I guess I'll go wig shopping soon. I hear I'll loose my hair 2 - 3 weeks after my first treatment. Hummmmm, here's my chance to return to my childhood and go blond!