Wednesday, October 31, 2007

Neulasta Day & More Good News

Slept in today and did my best to be a human paperweight this morning. Accompanied Jenn to Wal-mart for a short time, and then went and got my neulasta. The outstanding news is that this morning, I called the OTHER cancer policy, and they verified this morning that they have completed my file and that if I called back on Friday they'd likely have reached a determination.

I got to see Liam give out Halloween candy and helped him take a bath. It was fun to be with him for a bit and see all the other Trick-or-treaters come by. This year was more sane, and not so many kids were literally being trucked in, although we did have two strange men come down, park at the end of the cul-de-sac and relieve themselves in the bushes! Afterwards they (adults) went up the street without any trick-or-treaters. The whole neighborhood had eyes on them and had they pegged for child molesters! Yuck.

There is a commercial on TV that I love. It's by Hoover and a large black dog walks into an all white house, gives itself a good shake all over and explodes into 20 little black dogs and an explosion of hair. I love to watch it when it comes on. It's just cute. You can go to the http://www.hoover.com/ site and in the lower right hand corner, and vew "latest commercials" to see if. I can't link to it though and youtube doesn't have a copy of it yet either.

Special thanks to Angie & Ravonda who came by yesterday to make sure I had my mail from school. You folks are just the BEST!

Tuesday, October 30, 2007

Good News From the Insurance Company


See the e-mail excerpt below:


Ms. Ward, I received notification this morning that medical records came in yesterday and the pre-existing condition investigation has been completed. It has been determined that the right breast cancer is not a pre-existing condition. Your claim will now be processed.


This will be a welcome solution to income/outgo issues, especially with hospitals where my 10% co-pay is still a nice chunk of change.


I got treatment #3 today. The oncologist told me today that I was doing excellently well for someone on my particular type of chemo (TAC). I always feel like such a wimp that it made me feel good for him to say that. Aside from the five days of decadron (steroids) when I have trouble sleeping and feel kind of crappy, followed by the nulasta shot that gives me joint pain (flu-like symptoms) as a side effect, and endless fatigue, I'm doing well. Other symptoms can pop up at any time. I've heard of two deaths recently of younger women who died from complications from chemo, so I always know the risk is out there, but I feel very blessed. My tumor is shrinking, and frankly I thought I'd feel worse (and I may at some point), but up until now, it's tolerable.


N. I did four puzzles today while passing time getting chemo. These are puzzles that are made for ME! I can figure them out without having a Ph.D. I have some tunes on a little MP3 player and I want to download some more so that I have more variety. I was the only person there listening to music and I was toe-tapping in the air the whole time listening to upbeat music. It really helps to pass the time in a positive way.


I came home to a special card from one of my chemo angels. See the image at the top of the blog. She does such beautiful creations, and it's so uplifting to get these beautiful things when you step out of the car coming home from chemo and there it is! Thanks, P. I'll look foreword to the book too. I think you plant very nice seeds with your cards. :) I also got a card from my dear friend R. I'm keeping every card I get in a basket by the bed. When I feel like throwing a pity party, I look at all my cards and feel loved. Thanks to everyone that fills that basket. Each one is a treasure.


Now, I'm going to call the local hardware store and see if they can recommend someone to come install my faucet.

Monday, October 29, 2007

Knots

I spent two hours on the phone this morning trying to unravel a mystical medical insurance knot that belongs to Betty. I think (but can't swear to it) that I unraveled her Gordeon knot of insurance antagonism.

I spent two hours on the phone working with doctor offices, writing permissions, and tracking that records have been sent. I'm totally alienating the lady at this one insurance company with my dogging of my file. This also required me to write a letter, and deliver it to a doctor in Carrollton and BEG them to fax the information to the insurance company. Yes, I actually begged the lady. I'm willing to surrender all dignity if I can actually get my files completed so that the insurance company can flip a coin to decide if they'll cover me or not! My Gordeon knot is getting to be pretty tiresome to work on.

I went to Home Depot (a place I hate and wish I didn't have to patronize) and got a new kitchen fawcet. Anyone know where I can rent a husband / handiman / handiwoman? I have learned the hard way, that I am not allowed to attempt to work with plumbing. I will happily pay someone to install the new fawcet. I also have a couple of loose roof shingles, if that person is versatile.

Then I went to EfM. Can you tell this is week 3 after chemo? Tomorrow I'll reset back to zero because I get my third chemo treatment. Gosh I hope it is much like #2. I actually had less problems with #2 than I did with #1 (stop laughing, I'm not talking about toilet concerns).

Sleep calls.

Sunday, October 28, 2007

Quiet in Bremen

All my running about yesterday really wore me down, so I went to church this morning (Thanks Hazel for thinking I'm "gorgeous.") and had breakfast with Betty and N. and then went home about noon to take a nap. I'll still sleep well tonight, becuase I'm just really tired.

Tomorrow I need to lay in groceries for ME because Tuesday is the 30th and that's treatment #3, (Really it is, N.).

Weather is crisp. I'm beginning to use the heavier hats when I go outside more. N. was nice enough to leave me with several to wear, and even one that my grandson and I can go out with in matching sets! Thanks for the other goodies too!

Thanks N. for being the best friend Betty could ever have. Your visits enrich her life so much! You get lots of stars in your heavenly crown for loving her enough to visit now when it's hard for her to be a friend back.

Hazel (my priest) told this story this morning: According to an old Cherokee legend, a wise elder was consulted about the concerns of life. He replied to his questioner that he had two wolves. One was dark, snarling, vicious and represented the darker side of humans (gossip, vice, pain and fear). The other wolf was light, friendly and pleasing, representing the lighter side of humans (compassion, love, charity). The questioner asked the elder, "Which one rules your life?" The elder replies, "The one you feed." It's easy to feed the dark wolf when you have cancer because fear surely is a driving force in day-to-day living. But I struggle to linger with the light wolf. I think most people do, if they are thinking and caring people.

I'm off to bed!

Saturday, October 27, 2007

Holy crap am I tired!

It may be week three when I have more energy, but I've really been busy (for me) today! I got groceries for Betty. That is a huge deal for me. Then we made Christmas wreaths for our doors. (They had pretty ribbon and decorations on the cheap at Wal-mart.) Then I went to a Geocaching event held right here in Bremen. It was fun to meet a lot of new folks (new to me and some new to the hobby). It was great to get together with dear friends. Thanks to Rebel for making the event happen. Thanks to all who traveled here for a nice dinner and great company. Geocachers are the best folks around!

I'm sooooooooooooooooooooo tired. Woah, am I tired!

Friday, October 26, 2007

Case Manager

I talked with my case manager (I have a case manager!) at my health insurance company today. I told her about the MD Anderson refusal to see me until I finished chemo. She said the referal she made was good for a year and that I could use it just fine in January/February when the chemo is over.

In the most ethical and informative way, at my request, she basically said that the plastic surgeon I saw Monday was full of s***. She said to get a second opinion right away! Right now, I need to just relax a bit and know that I have months to figure out what to do and just be patient. I don't have to decide right now. The confusion comes in because of the possibility of any kind of reconstruction (or not) and the statistical likelihood of recurrence after lumpectomy, mastectomy or double mastectomy, or mastectomy and a reduction on the other side, or ????? What is best to prevent recurrence? What is best for balance, symmetry and comfort? What is the long-term best choice (implants don't seem like a reasonable long-term solution) but I'm not interested in doing some kind of big surgical procedure like DIEP or TRAM FLAP reconstructions (shiver). How mutilating will it be to just do a mastectomy and leave things flat? Where is the reasonable line in all this? I have no idea. What expectations are reasonable for a plastic surgeon on someone with my body type (fat)? I'm lost in all the choices. I hope some clarity will come out of the waiting.

Thursday, October 25, 2007

I got the call.

Well I was driving to Carrollton when I got the call from M.D.Anderson. After a short time on the phone I was told that I am not a candidate for evaluation until and unless I finish my chemotherapy. That won't be until January or early February. So there. I'm very disappointed because I really want them to help me sort out what surgical option is best for me, but we'll have to do that in 2008. I'm bummed. Really bummed.

I went to do some pottery stuff tonight. I couldn't really decide what I wanted to do, but I fiddled around and did a bowl and a little kitty thingy. Since it is something I can do sitting down, I could last the whole two hours and it was nice to meet some new folks and just do something with my hands. I have all kinds of ideas for things I want to take with me the next time I go. It is kind of fun to be doing something creative, even if I'm not very good at it.

For the first time in years and years I'm a little on the cold-natured side. I don't know if it is due to the fact that I'm post-menopausal (finally!) or if it's the result of being on chemotherapy, but we had a couple cool days, and the lightweight jackets that I've generally made do with over the last several years, just don't keep me warm enough. I'm such an extravagant person that the last jacket I bought for winter was purchased in 1989. You think I'm just too much of a spend-thrift?

Wednesday, October 24, 2007

Just Ducky


I've been doing research, on research, on research. I want to be the smartest I can about my cancer (only about 15% of breast cancers are my kind, and it's one of the least researched). I'm feeling pretty ducky right now. Tomorrow I'm hoping I can go do some pottery stuff. We'll see if I can handle it. Today I got my flu shot and that was about it. Pretty useless. :)

Tuesday, October 23, 2007

MD Anderson Update

UnitedHealthcare has very promptly provided me with what I need to begin getting everything ready for me to go out there (Houston, TX). I've received travel expense forms, and special ID cards, and I've submitted an electronic referral to MD Anderson. I expect that I will hear from them in the near future (they say within the next 24 hours).

I have a distinct lack of FUN in my life these days. I thought about it and went by a local artist's studio today and have arranged to take a weekly class in pottery. I actually met this local artist W A Y, W A Y back when I was doing my bachelor's degree at West Georgia. She and I were both nontraditional students and would sometimes get together. I figure it's something I can do while sitting down. She's flexible about what times I stop by the studio based on my puny chemo-weakened system's ability or lack thereof.

I'm dogging three different insurance companies. One is my disability policy, and the other two are cancer policies. I have to say my medical insurance has been awesome so far. The cancer policies are being so thorough in investigating all the details of my finding and getting the diagnosis of cancer, and the previous two years of medical treatment, that I'm getting frustrated with their lack of a decision. I think one of the two finally has all they need, and I will nag them tomorrow! The other... I dunno. I have to just hope I'm getting closer.

My labs are showing that my body is doing well with the chemo. Today was a check day for me at the oncologist. Next week will be dose #3, but I feel good about it because the poison is getting to the tumor. I know because I have seen it for myself that's it's shrinking it. Ooooo Rahhhh!

Monday, October 22, 2007

Introduction


I'd like you to meet Elvira (the dark spot among the lighter material). Elvira is what I named my tumor. Today's ultrasound of Elvira shows that she is about 1/4 to 1/3 smaller than she used to be. The chemotherapy is working! I think the technician was a bit startled when I wanted a picture of my tumor, but I want to be able to visualize it and hold the image up and look at my enemy.


The breast surgeon today helped to clarify WHEN the surgery would take place on my breast. It will be three weeks after my chemotherapy is done, which is likely to be sometime in late January or early February.


The type and breadth (literally) of the surgery is so muddled in my mind right now that I have no idea what I want the surgeons to do. I talked to a plastic surgeon today, and he does not feel I am a candidate for any of the reonstruction techniques that I was favoring, should I elect to have a skin-sparing mastectomy. My fatness definitely limits what the plastic surgeon feels is possible.


I got some materials from the insurance company today regarding my upcoming trip to MD Anderson in Houston. I'm glad that I am going. I'm glad that I get to talk to some different surgeons and get some other ideas. I need more input about the surgical options because I want to do everything I can to limit the chances of cancer returning -- everything. Especially because I am a triple negative, there are just no treatment options available to me once I've completed surgery and radiation. So, I feel I have to be particularly thorough in my surgical options. Yet, there are some real differences in the perception of acceptable risk involved here.


I get to decide what treatment option I want, but I need more information to discern what option is my best bet. I need information from other women who've had a mastectomy and are larger women. The plastic surgeon today said that breast reduction wouldn't hurt at all. (Seriously.) Now you and I know that once scalpels are involved so is pain. How can a surgeon ethically tell a patient that cutting on them will not hurt? That's just crap. (And this guy is highly unlikely to be doing my surgery too!) Thankfully, I have a few months to research these options and sort through the variables. I need that time right now.


What I take away from today more than anything is that with two chemo treatments down, a difference has been made in the tumor. I have to take hope and heart from that. Another day when I'm not so overwhelmed by cancer, cancer, cancer I will think and research my options for surgical intervention.


Sunday, October 21, 2007

Contemplating Peace from Religious Perspectives


Eminent theologians from Jewish, Hindu, Islamic, Christian and of course the Dalai Lama represented the Buddhist faith came together today at Emory University in Atlanta. I was graced to be in the presence of my daughter and other special friends who all were open-minded people. I sat with 3,000 or so other folks who also came to listen respectfully and take in what the Dalai Lama and other theologians had to say about how to contribute in any way to building peace.

The Dalai Lama was thoroughly charming, endearing, and very tender in the way he spoke to us, and the way he interacted with his "peers." He spoke of many things, the importance of children feeling safe and secure in their mother's arms -- taking that secure feeling with us out into the world in a feeling we would later identify as a feeling of happiness. He talked of the importance of family and how family is the place where that happiness is encouraged to grow and develop, and that while many of us might or might not accumulate knowledge and degrees and higher education, all of us were capable to working toward mutual respect with others and working toward peace.

He spoke of his respect for and incorporation of the ideas of Mohandas Ghandi and how Ghandi worked in his lifetime for the Muslims, Hindus and Buddhists to respect each other and allow one another to worship in peace. He spoke of humans having universal human rights and that all 600 billion people on the planet were due respect as holy beings.

I hope what I have written is an accurate interpretation of what I heard. It was incredible to hear him speak in his articulate and simple ways. I also enjoyed hearing Sister Joan Chittister give all those old men holy hell for continuing the patriarchy out of habit, and it gave me hope that apparently the Dalai Lama heard her words and genuinely took them in with regard to Buddhism. (Read more about the speakers here.)

The speaker who represented the Hindu perspective, is, in fact, Ghandi's grandson and he was also an articulate speaker who reminded us, that as the Dalai Lama spoke of the great warm feeling of happiness one finds when returning home, he still is not able to return to his home, Tibet. In exile now for more than 48 years, there is no crack in the Chinese viewpoint concerning the land which was once the place and home for the Dalai Lama and Tibetan Buddhism. Something that causes sadness for many, many Tibetans and Chinese.

I got to see the mandala up close. It was a divine moment. Just divine. It's 100 times more beautiful up close than it is at a distance. The detail and the perfection of those bright colors and designs is sublime.

I lay down in the car the whole way there. I lay down in the car the whole way back. I'm buoyed up by the excitement but there is no question that I am holding this bed DOWN for the rest of the evening! I'm so glad I got to go. I loved having friends and family around me at such a wonderful moment. I'm glad to be home.

Saturday, October 20, 2007

Dalai Lama's Mandala

They finished the mandala this morning. Isn't it exquisite? Just totally exquisite.


Friday, October 19, 2007

Friday's Travels

My big projects for today were cooking dinner, ordering a hostess gift for a special dinner next week, running by the Motor Vehicle place, and dropping paperwork by the oncologists' office. I got so tired running errands, that when it came time to peel potatoes, I put two big pots in bed with me and peeled the potatoes in bed. I think the fatigue from chemotherapy is rediculous! That sounds so incredibly crazy to me. The real mashed potatoes were good though.



The monks have been busy today too. Look how far they've come on the mandala since yesterday! It's incredible what they do. The mandala is so beautiful, I believe just staring at it would help heal me. I know it must be stunningly beautiful.

Thursday, October 18, 2007

Shirley The Mail Lady and Other Events in My Life

Shirley the mail lady here is very appreciated because she takes care of all of us. She knows who works and can't get to the PO to pick up packages. She'll leave you a note where she put the package and then leave it where you can actually get it. She knows everyone and she's just a nice person. Back in July her husband and a few hands were doing work on the cattle at her farm. The bull was clearly unhappy about being wormed and being given a couple shots. He got a mean look in his eye, and before Shirley could get out of the way, he gored her, threw her up in the air, and then stomped the crap out of her when she hit the ground. It split her backbone lengthways and she broke several other bones as well. By the grace of god, her backbone though broken -- the split parts didn't move. She lived, and she is recovering. I sent her some get well goodies, and asked after her everytime I went to the post office. Today was her 2nd day back on the job after being off for several months to recooperate. She rang the doorbell and me and my bald head came to the door. She gave me a pin of the breast cancer stamp the PO has. She wore the pin this past weekend when she walked 1 of the 3 days of the breast cancer walk! She walked 20 miles, and on her identification card, she proudly walked in honor of ME. All I could do is hug her and tell her how honored I was that she would do such a thing. She is lucky to be alive, but was motivated to walk 20 miles on behalf of ME. She said there were 11 ladies on her team and that between them, they raised over $35,000 for Susan G. Komen. She decided to do this based on the article the local paper ran on me, which she read while she was recovering. I am humbled. She's still wearing a back brace, and clearly in pain. What a woman!

The monks at Emory creating the Dalai Lama's mandala started this morning with about this much of the mandala created from the day before. At quiting time today, they had done this much more. I've spent a lot of time watching them make this creation, and it's amazing the amount of endurance and patience that they exercise. I wish I could see them do this in person, but feel the gods have graced me by letting me see it from afar via computer.

It's interesting this business of filing insurance claims. One of the company's that I am dealing with has asked, on at least five occasions, for my pathology report. I have faxed it on at least five occasions to them. They just asked for it in writing. I got the email addy of the "Cancer Benefits" coordinator and I scanned the dang thing and e-mailed a copy of it to her tonight. I feel like they are stalling and delaying and just being incompetent. They have over $15,000 in claims turned in to them, so far, and the written response has declined over $11,000 as being outside the boundary of the policy coverage. They suggested I go back and read my policy. I'm like, "I'm sending you every bill associated with this cancer and you can decline it, but if it's cancer-related, I'm sending you the bill!"

If you mail them stuff, they scan it in and then discard the originals because they only work with electronic documents. If you fax things to them, some dope down in the "mail room" decides how much of any fax coming in is yours. So if you send a 27 page fax, and the dope decides that you sent in 14 pages, if the other 13 pages are not sent to be scanned you're just screwed. There is a 24 - 48 hour delay in getting documents into the system because they don't go to a specific person, they just get scanned and then when a person pulls up the electronic file, there might be 13 pages, or 1 page or no pages of what you faxed two days previous. It's such a hassle. I understand they want to be "efficient" and "paperless" but I'm about ready to reach through the phone and grab someone's genitalia to let them know I'm a serious woman!

If I made copies of everything and Fed Ex'd it to them, there's still no telling if the material would get scanned in by Mr. Minimum Wage in the mail room. Eric explained to me a concept called "escallation" within a company the other night. I'd never heard of it before, but I'm about to start asking for supervisors, and supervisors of supervisors. This is rediculous. Actually, I'm about to call the State of Georgia's Insurance Commissioner. THAT is who I'm going to get to chew their butt! I'll let John Oxendine's office do it. They don't get to NOT pay because they're incompetent. That's not an acceptable way of handling business.

My world is small, but I am not helpless.

Wednesday, October 17, 2007

The Wheels are Turning

I put the wheels to turning today, so that I can go to M.D.Anderson Cancer Center in Houston, TX for a review of my medical situation. They are a national cancer center of excellence, and after asking lots of paranoid questions of my insurance company, I've decided to just go. I don't know yet when, or how, or who may accompany me, but it's going to happen. The ideal is to go after my next chemotherapy session (the day before Halloween) and after I've started to regain a bit of strength back from the treatment. If things go as planned I'll be going and coming back before Thanksgiving. I think going there will help me discern what I need to do surgically, if my chemo is actually killing the enemy within me, and find out if there are any treatments I might be able to take advantage of, that just aren't as well known here. Today I did Betty's grocery shopping and was ready to fall over from exhaustion, so the idea of traveling seems impossible right now, but if they have to throw my fat butt on a skateboard and slide me through the airport, I'm going.

So far, none of the cancer policies has decided they will pay. So far, I have only two-thirds of the income I typically have. So far, things are getting officially scarey financially. But I'm going to load all this on a credit card and live in faith that if the insurance company says they'll pay for it, I will eventually be reimbursed and can then pay the credit card off. What is, afterall, the price of a life? My life?

I thought of my daddy today. I think every boy and girl spends time sitting and watching the fascinating process of a man shaving. It's always interesting to a child to watch the ritual and the humble everyday ablutions of this manly parent. At the bottom of the sink would be the foamy residue with small, black stubble that never quite all washed down the drain. Today when I got in the shower there was a whole sea of mens beards on the floor of my shower as the stubble of my head clearly had not washed down my drain. It made me smile though, to think of my daddy and his shaving and the little girl, me, sitting or standing on the toilet to see better what he was doing. As a matter of hygiene, the stubble is now gone, rinsed down the stubborn drain in my bathroom, no more to haunt me in my daily ablutions.

God bless Eric and Jenn as they continue to feed my body, when my spirit and soul are withered by this chemical mix.

Peace.

Tuesday, October 16, 2007

A Little Stronger

I'm not boasting because I'm still very much a limp noodle, but I'm back to getting stronger each day. I can do one constructive thing in the morning, and then rest and sit up and have a nice bit of social time at dinner time. That's about it.

Today's surprise was that when I was showering this morning, the little bit of bottle-brush-like hair that stood at attention after the buzz cut, decided that most of it would let go today. So there I was in the shower and there was this snow-fall of short little hairs that just let go. It was startling, and not unexpected. What was unexpected was how long my follicles held on! I'm surprised that it took this long for the hair to let go. The line between my face that has had sun on it since 1951, and the dome which hasn't seen the light of day since about 1952 when I got hair, is very dramatic! Talk about white!!!!!! There are still about 1/10th of the normal amount of follicles that are still holding on for dear life, but I don't give them much hope for a very long future.

I'm excited because this coming weekend, I get to go see the Dalai Lama at Emory, as well as some other eminent speakers. I never thought I'd get to see, hear, be in the presence of such a special soul. I'm thankful to Eric who's fingers on the computer and apparently endless patience, made this event possible. I'm a little worried about being able to sit up for such a long time, but somehow, someway it will work out. By this weekend, I'll be even a little stronger! Look here to see the monks making the Dalai Lama's mandala in preparation of his visit. It's cool.

Monday, October 15, 2007

Monday, EfM

Our EfM books came in from Suwanee. I'm year four. The last year of this history/Bible/theological study program. I'm trying very, very hard to attend as many Monday nights as I can this year because I don't get a chance to get out much right now. Today I was fortunate enough to hang out with Jenn, and keep her company, but I had to rest all afternoon to be able to even go to EfM, and my "innards" were not happy this evening at all, but I still made it.

I have to focus tomorrow on getting some information from my liaison with MD Anderson, and getting a special treasure for a special person.

No sleep for the weary last night, but perhaps....just perhaps....tonight there might be some. I'm hopeful.

Sunday, October 14, 2007

Juicing

I had a dear friend come show me about juicing yesterday. Jenn and Eric lent me a juicer they have, and then P. my long time friend and health food advocate, came and gave me a lesson on how to use the borrowed juicer. As a 1950's American more in-tune with pizza and tv-dinners the idea of juicing is a pretty revolutionary idea for me! But hydration and hydration with good stuff is important. I discovered that carrot juice is nummy with a little apple in it or a tad of celery. I may not ever turn into a healthy eater, but I think I can improve and be more healthy. My tastebuds are under attack right now and food is harder to enjoy in the same way, so exploring new food options is good for now. I've become a fiend about apples and peanutbutter, which I feel is pretty good because it's protein and fiber and good taste. The tastiest experience yesterday was something I am not sure my poor, noral blender can do, but which P's exotic blender makes magnificiently: a wonderful sorbet / ice-cream-like mix of sherberty delight. Put some frozen bananas into the exotic blender with some strawberries and out comes this stuff that is so wonderful! Yummmmmm. I have three bananas on-hand and they are popped into the freezer right now to see what my blender will do with them in the near future.

I'd gone about five nights without more than an hour or two of sleep and was getting pretty grumpy and aggitated. Last night, I surrendered to "better living through chemistry" and just decided it was time for DRUGS (legal of course!). I slept a deep sleep last night that was soooooo refreshing and so good for me. It helped a lot, but I still have a lot of aches and pains from the neulasta or laziness or who-knows-what. So, my joints are achy. I want to go outside and just sit in the sun for a bit, and may yet, but am terribly effected by fatigue right now, which is right on target with where I am with chemo -- so maybe it's not a character flaw but more chemical in origin. Or maybe I'm am a bum. Who's to say? (Please don't.)

Whatever "get-up-and-go" I ever had, has "gotten-up-and-gone." I'm a wimp of aches, pains, and tiredness. Not a genuine happy camper at the present. But in a day or two, perhaps that will be cured. The one thing I learn is that day-to-day this chemical mix changes and so does how I feel.

Friday, October 12, 2007

Eating Out with Betty

Betty's social censor is broken, so she doesn't remember anymore to try and be descrete when she's burping. That can be somewhat disconcerting when you have her at a restaurant. Tonight she wanted to go out, so I reminded her to use her best manners and not be as relaxed as she would be at home. She said, "Oh my goodness." And she was great at the restaurant. If I can remind her and she will be more conscious about her actions she'll extend her time with me being willing to take her out. We went to Juanito's and she had her favorite and some flan, and enjoyed ourselves very nicely. It doesn't take much to have excitement in Bremen on a Friday night.

My mouth tastes like metal. It's hard to taste much right now because everything tastes like a nickle or dime. Makes it hard to enjoy eating out, but today was the last day of decadron (steroids) so maybe that will clear up a bit in the next few days.

Today's useful thing of the day was to clean the goldfish tank.

That's the best I can do right now. Just a little jelly-like feeling in my arms and legs and trying to keep on keepin' on. I didn't sleep much last night probably due to the decadron, so I'm hoping tonight I can get some rest. That will perk me up a bit too. Don't you love these cooler nights and bright fall days?

Out of the 13 votes for travel locations, it is clear that people want to go places where people look most like us WASPs and are more likely to speak English (Europe & Scandanavia), or at a minimum look similar to us (Central / South America) and are not volunteering to go to Asia or India (Though I suspect the number of English speakers in India would be pretty high.). I've wanted to see Lake Baikal in western Russia for decades. I think my chances of taking the Trans Siberian RR are pretty low now. I'll have to visit Lake Baikal virtually.

Let's see where the next survey takes us!

Thursday, October 11, 2007

Quiet Day at Home

Just a quiet day at home. Side effects are minimal today, thankfully. I did a little laundry to redeem myself from being a complete loafer.

Jenn and Eric were kind enough to have me over for a super scrumptious dinner. It was fun to get out briefly. Can't believe how chatty Liam is getting these days. His vocabulary is just growing by leaps and bounds.

Is there anyone out there that really gives a rip about what's happening with Brittany? Something is wrong with the news when there's less mentioned about the US intervention in Iraq, than what's going on with this woman who clearly needs some private time to get herself together but is being stalked day and night by paparazzi. Where are our national priorities? I don't understand.

Wednesday, October 10, 2007

Newlasta

The newlasta that I take the day after my chemotherapy is a simple shot put in my belly subcutaneously. What is not so simple is that when I get the bill it will be for about $1,800. Amazing isn't it? I realize there is no price on a life, and I'm grateful to have insurance that covers so much of my fees. But it's scary how much most of these drugs cost. It's also amazing that there is a drug available that will help stimulate my bone marrow so that I make more red blood cells. I was stunned yesterday when talking to a friend to find out a friend of hers, taking chemo, age 34, died from complications from her chemo. I'm 21 years older than her. Older means more tired, more worn out parts, and less energy to fight the fatigue.

I've spent the last 24 hours doing a lot of research on breast reconstruction options, what my insurance will cover or not cover, and looking into my heart and mind to figure out what options I can most comfortably live with. That's the key...LIVING with it. I have about two weeks to decide what surgical option I'm likely to feel best having. I see the surgeon and plastic surgeon on the 22nd to plan that out some. I haven't got any idea about how to squeeze in time to go to MD Anderson. I'm also nervous about Jenn going with me, as she gets closer and closer to her due date. I think if I even go, it will need to be with someone else as my traveling assistant and medical advocate.

Thanks to everyone at school that participated in the food drive. Angela, Angie and Ravonda were kind enough to be the food delivery fairies and visit for a short while. I get a little lonely at times so the visit is as precious as the food. Thanks everyone. It's wonderful to feel so cared about.

Time to head for bed. If patterns repeat, I'll start to get more weak starting tomorrow.

Tuesday, October 09, 2007

TAC #2

8:45 am I got my butt to the oncologist's office and by the time they got through putting the drugs in me, it was 3PM. I already have fuzzy teeth, but at least that's just annoying. I'm taking my compazine to ensure I don't get nausea, and so far it's working. The mind-blowing suggestion today from the oncologist is that he thinks I should have my breast surgery after treatment #3 on Oct 23. So that means I have to get on board with figuring out how much and what will be eliminated. I'm kind of attached to all my original manufacturer's design specifications, but recognize I have to be aggressive in killing an aggressive cancer. I've asked a plastic surgeon for a consult so that maybe I can sort out what's logical and appropriate. Hopefully after I talk to him, I'll have more clarity about what to do, how much it will hurt and how big the cuts have to be? Most important, what do I need to do so that I can be most assured the cancer won't return? It's a muddle and driven by statistical analyses, and I want to go outside the statistical box and do what's the safest bet.

I also found out today that a "revised" pathology report has been submitted. What's up with that? Of course the "Records" lady couldn't tell me what the revision is, but I asked her to fax the report to Dr. P and maybe he can give me a clue tomorrow. I'm trying hard not to get too frustrated/anxious about it, but it's ANOTHER weirdity about me and my pathology. This is actually the FOURTH pathology report. What the heck is new? Is it bad? Is it good? Is it just information? I think I don't like pathologists.

Monday, October 08, 2007

American Cancer Society -- Thanks!


Today I went to the ACS program "Look good -- Feel Better." I thought it was a kind of hokey idea. But when you're bald you'll grasp at straws to improve your looks. It was, in fact, kind of affirming to be in a room with a half dozen other bald ladies. We got to try on wigs, learn some make-up tips about how to care for skin that is changed as a result of chemotherapy or radiation therapy, and generally giggle like 13 year old girls. It was rather uplifting and it was fun. I'm grateful for the bag of very high class cosmetics and the tips on how to use them. Soon I'm likely to lose my eyebrows and eyelashes and without some make-up I'm going to look pretty odd!


I got the nicest gift bag from P.H. at school. Thank you so much. Your thoughtfulness and prayers are appreciated. Thanks to D., L., & C. for the lovely card with such supportive sentiments. Jeff, please tell all the students THANK YOU for the banner, and basket of cards. I'm keeping all my cards together for those low moments that are inevitable when recovering from a long treatment like I have ahead of me. Thanks to A. also for just being the kind, good person that you are. You're a gem.


Today I didn't need a nap! First time since my chemo three weeks ago. Tomorrow I get #2. This time I know what to take with me, and what to expect to a degree. I talked to my insurance company about the potential for visiting MD Anderson in Houston for a 2nd opinion. They are considered one of the Cancer Centers of Excellence and my insurance is offering to let me and a travel assistant go there to have my records and cancer situation reviewed to assure I'm getting all the treatment necessary to attempt to control my cancer. Personally, I'm stunned that my insurance has offered such a treatment review. Presently, they say that MD Anderson won't examine me until I finish my chemo, so we'll see what develops.

Sunday, October 07, 2007

Wisdom

My daughter and son-in-law are such smart people. I really admire what great parents and how thoughtful and wise they are in the way they respect and treat their child. They are the best parents I know. It takes wisdom to know the subtlties of what's right and what's not so right.

My victory today was making it to church, doing a little grocery shopping and then having a great power nap. Jeff, I'm ready for your visit, and have the lesson plan factory ready for your arrival tomorrow. I hope the sub is a genuine help for you. I miss working with ya.

Saturday, October 06, 2007

Who is this woman?


Yale Law Library and a FINE
example of University Gothic
architecture. Summer 2007.


Check out the size of the school bus at the
Sabine Mine in Texas where I went in 2006.

Some of my blog friends haven't really met me in person and are a bit vague on the details of my life, so if you know me really well, please hang with me as I introduce myself to some fans who don't know me as well.

I'm a person who has lived life at a fast pace. I got married at 19, had a daughter at 24, and was divorced at 26. My ex-husband was a minister in the Christian Church (independent, non-denominational church loosely affiliated with the Disciples of Christ). Our daughter was 2-1/2 when he decided his life needed to go in another direction. My daughter and I were warmly taken in and helped by his mother and father, thus continuing a life-long and deep friendship with my in-laws. Unfortunately, in 1983, my father-in-law, Bill, died due to complications from some medical testing. He was an extraordinary man and a part of my heart died with him. Betty, and I as two single women hung out together, traveled together and did a lot with Jeny (and subsequently her two half-sisters) just because it's more fun to do things with someone than alone. These years of being buddies, helped us both as we could do more together as a team than either one of us alone. She retired after the sudden, unexpected death of her son, and what was depression and grief soon became more clearly understood as Alzheimer's disease. My daughter, working toward becoming a midwife and married to a wonderful fellow in Bremen, Georgia helped Betty and I move to Bremen about five years ago, from our country home of 20 years. Betty still lives semi-independently, with help from me, my daughter and a part-time paid caregiver.

Over the years from the time of my divorce on, I wanted to go back to college and finish my degree so that I would have more career opportunities. In 1989 I cashed in my retirement and returned to college full-time when Jeny was 13. I finished my B.A. in Psychology, stayed to get an M.A. in Psychology, and then even went on to get a 6-year degree called an Ed.S. I had worked for many years at Georgia Tech as support staff, and was fortunate to get a professional job there after I finished college. I taught there for 11 years before taking a promotion to another university. Unfortunately my career path needed to take a U-turn after finding out I was not the right person at the right place at the right time, so I morphed myself into a K-12 teacher.

For the last 7 years I've worked at high schools teaching both self-contained and collaborative classrooms. Right now I'm on leave from Haralson County High School, located in rural Tallapoosa, Georgia. I love it there. The more suburban schools have many students who are street-smart and can be very challenging when it comes to deportment. I like teaching where I am because the students are not as effected or affected by the urban popular culture. I genuinely feel like I make a difference with my teaching. The last two years I've been teaching in the area of Social Studies, mostly World Geography, with occasional forays into U.S. History, and Citizenship and Economics. I like my colleagues, my school, and the content area that I'm privileged to work in.

Teaching, however, is a very demanding job that requires a lot, lot, lot of physical energy, walking, and constant effort from the point of arrival to the time you go to bed at midnight. I have been a strong-minded, and strong-willed person all my life and just knew that I'd be one of the people who could work through chemo. That was until the third day after my first chemo session when I hit the wall with a splat. The fatigue they talk about with chemo is unbelievably debilitating, and I knew I couldn't continue working. I'm presently on FMLA from work, and pray that somehow, someway I'll be able to return to my job after my treatment is completed. It's going to be a long road to recovery though and there are many uncertainties.

I love learning and so during the summers I look for teacher training opportunities. Two summer's ago I got to go to the Texas Mining and Reclamation workshop at the Sabine Coal Mine in Texas. It was an awesome week of learning science, particularly in the area of Geology (I have a minor in Geology so loved it.). This year I applied for a workshop on the Colonial Period of American History, and was accepted to spend a week at Yale University. I had a fabulous week at Yale and feel so enriched and so privileged to have gone there, been a part of that campus and learned from an eminent professor there. I did it as a part of The Gilder Lehrman Institute. It was fabulous. Just before I left was when I found the lump in my breast and called to make a doctor appointment for my return. If there is such a thing as re-incarnation, I want to be able to go to Yale in my next life, but I would like to qualify that wish by saying, I hope it's as a student, not a rat, roach or garbage collector! It's a special place in the world of learning -- almost holy.

So, I've lived through several career changes. I've really not had any special men in my life since my divorce. I attribute that to the fact that I've been overweight pretty much all my life, and most men want women who are more svelt. I'm also a person with a strong desire to learn, read, travel and maintain strong ties to family. That isn't always compatible with romance at my age either. So, it's me, the two cats (Romeo and Chelsea) and three goldfish (Doc, Baby & Gus). I'm the only person I know that was stupid enough to buy $0.29 goldfish and end up spending some serious money to keep them in an ideal growth environment. READ about fish before you buy them, not afterwards! I got them to please my grandson, and now they please me. I enjoy having them and watching them.

My family is small but very important to me. I try to keep my grandson on Wednesday nights so my daughter and son-in-law can have a date night. Recently I had started taking Liam to church with me, but as the chemo sucks the energy out of me, it's become less possible. I have a brother, sister-in-law and nephew that live in Juliette, Georgia. I don't get to see them as often as I'd like, but we talk often.

I am an Episcopalian and attend St. Margaret's Episcopal Church in Carrollton, Georgia. I participate in a program called Education for Minstry (EFM) which is a bible study, history, philosophy class that runs for four years. This is year four for me, and although I know I'll have to be out some, I wanted to do it this year because I knew it might be most of my social time out. I'm also a member of a lay religious order, The Daughters of the King, which focus' on helping the priest at our parish and living out our personal religious vows. My hobby is Geocaching. It's a fun type of treasure hunt using a global positioning system receiver and information off the computer to find little caches (stashes) that are hidden around the world. I've met some of the nicest people in the world geocaching and very much enjoy the challenge of finding treasures wherever I go.

In December I'll turn 56, and somewhere around that time I'll be the grammy to a new little grandaughter. My daughter is a nurse midwife, and her husband (the nicest guy I know) is a professional who works in the field of community development for a nearby town.

I still try to help my mother-in-law though it's harder these days. Sometimes I can help, sometimes I can't. My high-energy grandson can visit with me some now, but I'm not really able to really keep him like I used to. I can't really go geocaching right now, so my geocaching friends are coming to me on the week before my 3rd chemo treatment when I should have a little bit of spunk in me. They warm my heart. While I can't really work, I am hoping to be able to occasionally do some light volunteer time at my church -- depending on my daily progress and levels of ability. Otherwise, I'm off in a world where there are many more unknowns than knowns. My energy levels are so incredibly diminished that just doing one errand in a day means I have to come home and nap. Right after the chemo for several days, moving or driving is not even possible. I'm fortunate to have most of the side-effects of some very nasty chemo, under medicinal control. I may have cancer but I am blessed with a supportive family, friends, neighbors, and colleagues. I've tied a knot in my rope, and I'm hanging on. And I know, no matter what, that however things turn out, I'll stand on Higher Ground.

Friday, October 05, 2007

Busy Monday Scheduled

Me and my baldness will go to an American Cancer Society program on Monday about how to "Look good, feel better." I say, "Prove it!" I have a doc appointment right after that, and then I figure I can go take a nap so I can attend EFM Monday night. Somewhere in all of this a colleague will stop by

I think the cats are stir crazy; they're running around the townhome today like they're in cat olympics.

Just a quiet day. I'm feeling good -- something I've come to appreciate in new ways.

Thing to never do: Do not send a fax from Staples. They charge EXORBITANT prices. $27 to send a 17 page fax. That's crap!

Thursday, October 04, 2007

Becoming Cancer

As much as I hate to admit it, my life seems to be so focused on cancer and it's treatment that I feel like I am cancer. My days are focused on getting ready for the next chemotherapy, calling insurance companies, calling hospitals, calling treatment providers, faxing information, picking up drugs, etc. God bless Brandall Lovvorn Pharmacy for being my local fax connection. They sent about a 35 page fax for me today, to an insurance company that claims I had not yet sent them claim information or medical bills. HA! Bills are beginning to pile up so I hope some insurance company starts sending money soon.

My new food fixation is apple with peanut butter. I can't tell you why my taste buds like it so, but I sure do. Fruit and legumes; can they be bad?

Wednesday, October 03, 2007

United Health Care

OK, I got a call from my insurance company today. They wanted me to know that I could go get a second opinion at Sloan-Kettering or MD Anderson if I wanted to. In fact they encouraged me to do so. I can't imagine trying to travel right now. Some days just sitting up is hard work. However, as a triple negative, going to well-known specialty care hospitals seems like a good idea. I'm open to anything I can do beyond the chemotherapy. Being a somewhat skeptical person though, I have to wonder if the insurance company could use the second opinion as a way to limit the treatment available to me?

Thanks to my secret pal at school. I love the plate and matching cup. I enjoyed seeing you today E. Sorry my place was in such a state of disorder. Those that wish to e-mail me at my home addy can do so using my name without any dots @bellsouth.net. You do not have to have a gmail account to just e-mail me privately.

There's an article in O magazine this month about the high rate of triple negative breast cancer in women of African decent. They have about a three times more common rate of being a triple negative than whites. The thing that struck me was how dismal the article is about the future for us. It's one reason I'd really consider going to Texas or New York for treatment evaluation / 2nd opinion / treatment. Makes it scary. I'm a chicken anyway, but reading articles like that just plain depress me!

Monday, October 01, 2007

Out and About


Today was bloodwork at the oncologist's. I ran by and picked up a poster-sized print of a picture I took this summer when I was at Yale. I ran by Hobby Lobby and picked up a bunch of kerchiefs, which seem to be the most comfortable headcovering for me, at least right now. Quick trip to Home Depot and then home for a nap because all that exhausted me.


Dinner with the family and then my big event of the week: I went to EFM, a church study group that I've been doing for several years now. I was so glad to finally be able to go. I missed the last two weeks, but should be able to make this coming week. My next treatment is the 9th, so the week after that, I might or might not feel up to it. We'll just see.


The picture at the top is the one I had made into a poster. I just love this architectural detail. It's one side of an archway, and I think it's just stunning.