"Did they git it awl?"

I just finished our home school for today. One of the greatest things I think about home schooling is that you can do it when the mood strikes... or in my case when Mom wakes up from the Benadryl she got in her cancer infusion. I'm so happy my son is beginning to read again. At the age of 3 he was reading at a beginning 1st grade level, but felt severely abnormal because the other kids could not, so after a poor school experience, he stopped reading and pretended he couldn't. I knew he was. I would see him do it and holy crap he zips around the internet like a whiz... finally now, at age 5 ½, he isn't pretending anymore and has picked up where he left off and progressing quickly. He is now entertaining himself with a video... I don't know how long that will last so this may be a short update.

Since I have been off chemo for many weeks now I have started to venture out into the community a little more. And I'm finding it hard to explain. I know people are trying to be nice, and trying to make themselves feel better... but man, I am so tired of the question "Did they git it awl?" or the sometimes more positively expressed, "they got it all and everything’s fine right?" I don't know what to say. I know people are used to that idea that you get surgery and they "git it all" and then you get chemo just in case "they didn't git it awl" and then radiation "fer certain." I try to explain, "Well... um... we killed it all... I have a dead tumor in my breast." This of course, results in a slow blink of the eyes followed by a glance at my breast as if they can see it... that's kinda funny.

That gets follow up with "are they going to take it out?" and I say "no." "It's fine to have a dead tumor in your body, no big deal." I've been asked if it will come back to life..."no, once a cell is dead, it's dead." That kind of thing only happens in the bible. I don't say that bible thing; but ohhhh I want to say it. Then I get "so you aren't having radiation or surgery or anything?" Nope. But then I am having that lung thing done, and I have to continue the fight to make sure I never get it back, but… oh hell... at that point I just don't want to explain anymore.

I know part of it is that people want some reassurance that, even though they don't think this could ever happen to them, if it did; it's fixable. And hearing that from me takes some of that fear away and reassures them. Yeah, I get that... cancer is freakin' scary. It's made my most horrible nightmares very real.

And to be honest there are days I don't quite understand it either. I have had this conversation in many places, the bank, the store, here and there. It's very hard to have it in front of my son. So I have decided just to say, "Yes. They got it aaaawwwllll." And in my mind I know that we killed it all. And when they say, "you don't have to have surgery or radiation?" I'm saying "no, I'm a miracle of modern medicine."

I often describe, with much affection, one of my older sisters this way when people would ask why we didn't look alike. I would say "she's a miracle of modern medicine." It would take a minute and then they would laugh as they realized the secret to her physical perfection... so touche'. Now we are both modern medical miracles!

My son is over his video now. He just brought me a book he is studying on volcanoes and we read how a volcano will have it's most violet eruptions right before and during a full moon. I don't know who is more fascinated with this fact... me or him?

Sunday Update

Ahhhh… Sunday mornings, my time to catch up on blogs and contemplate life. It's also one of the rare times I have alone. Our nanny goes to church (yes, really) and my son sleeps a little late. It's just me and the cats, by ourselves for a little while.

I had yet another thorocentesis this week. Yep, the needle in the back. Another liter and half of beer-looking fluid. At least this time it took 3 times longer to accumulate. And wow... this was the most painful recovery from it to date. I'm still sore. When I breathe in fully it hurts and still makes that crackly sound.

I scheduled the talc pleurodesis for the 26th. I'm hoping for a short, 3 day hospital stay; but I know I have to prepare for longer. So the next couple of weeks will be a lot of work for me. And yes it's true; I will be continuing the tradition as a member of the Child family hospitalized at the end of September.

I also blew my knees out last weekend. I have off and on had problems with mild arthritis over the past 10 years or so. Last weekend I was thrilled to feel somewhat functional and I spent the two days playing with my son. We played soccer, tag and continuing with his entrepreneurial enthusiasm, he offered to wash the car—for a small fee of course; a job that required a lot of my help. He was thrilled to have his old Mom back.

When I woke up Monday me knees were swollen up to the appearance of a medium ripe cantaloupe. I hobbled around all week. I iced and elevated when I could. Today they are much better. During this problem I recalled what I used to do before to "fix" it; a lot of ibuprofen.

Being cautious I searched and found that ibuprofen isn't recommended with my medications. During that search I found a wonderful article on Zometa. Something I hadn't read before. An Austrailian test found that use of Zometa, in the same protocol that I am on, reduced the reoccurrence of metasitic breast cancer in pre-menopausal women (got all that...that's me!) by 2/3rds. 2/3rds!!!! Now that is a statistic I can get behind. Awesome.

Forks are Extra

I now believe my son to be an economic genius. I think he will rival Bill Gates one day in shrewd business savvy. I knew he had a gift for math, but now I can't wait to start teaching him more economic and financial things. It should be fun; I'm glad I got so much education in those areas myself. Now I have someone to teach it all to.

Here's what happened; about 2 hours after he moved into his new "apartment" it dawned on him that his plan had one big flaw. He didn't have a fridge and thus no place to store food. So he came back down and proposed a swap. Still not giving up, he suggested that he would move downstairs and make the kitchen/dining/family area his apartment and I could live upstairs in the bedrooms. He then embraced this idea with much enthusiasm as he also realized that gave him access to the TV and internet... lol.

After much discussion I got him to understand that these areas are "family" areas and belong to everyone and if he wanted to use them he had to agree to become part of the family again. He thought about it for a long time though, so I told him that maybe when he was older—like 10 or so—I would build him a bedroom downstairs and he could live there and my bedroom could be upstairs. His eyes danced with glee. I had planned to do that anyway. His room upstairs is tiny and right next to mine; eventually he will need more space. That was the deal closer, he agreed to be part of the family again.

Then I gave it some thought and decided that it might be a good time to do some more educating about money and how it all works. So I suggested to him that he could "earn" enough money to buy the ball he wanted. He was perplexed at first and asked "can you find a job for a 5 year old Mom?" I explained that since the next day was the nanny's day off he could do some of her work and I would pay him for it. He loved the idea. The next day he loaded the dishwasher himself, swept the floor, helped me with some Jungle Roses things and even made me lunch all by himself... and yes, it was not only edible, it was tasty. He got enough money to buy 2 balls he wanted.

We went back to the store and he picked out the balls, but noticed that they now had the Halloween decorations on display. We both love Halloween and he had to "check them out." I didn't see it, but they had strung a wire across the top of the isle that had a motion controlled ghostly thing that slid across it when someone walked down the isle. Yep, you know it. It brushed against my now bare neck in the back and I let out a blood boiling scream. Much to my son's delight; he thought that was the coolest thing ever!

When we got back home he added the balls to the collection he already has and explained that he "needed" those because they were a different color and questioned me with a "now do you understand Mom?" I said "okay" …sigh. He then told me that he wanted to keep working so he could make enough money to go back and buy the ghost that had scared me so much. He even showed me where he plans to hang it on the front porch. Sounds good to me, I can use the help too.

He made a list of jobs to do the next day. Included, of course, was making me lunch. He is quite the little Wolf Gang Puck. He loves to cook. And I found he especially likes to make things for me that he thinks are yucky, like salad. That day he made me a huge salad; even tossed it with dressing for me and the works. It looked wonderful. He brought it to me with water and curiously… a tiny spoon. I walked back into the kitchen and said "I need a fork." He blocked the silverware drawer with his stepstool and thus I needed him to move in order to get one. He said, "Mom, forks are 2 dollars." "What?" I said with surprise and a little bit of awe. He says "spoons are free, forks are 2 dollars." I about fell over. My 5 year old son somehow instinctively figured out the economic principle of scarcity and demand all on his own... I'm thrilled... lol

I paid the 2 extra dollars and ate my wonderful salad. By 10 I'm hoping to make him Vice President of Jungle Roses... he's bound to want his own office though and, no doubt, his own fridge.

We all must pay the rent somehow... right?

My son is mad at me. We fought over a ball in a store. I believe he has plenty of balls... no pun intended... he thought he needed one more. When we got home he announced to me that he was moving into his room, that is it now to be considered his "apartment" and we live separately. He is moving things in there now that he thinks he will need. I could not resist; I asked him how he plans to pay his rent. He didn't know what rent was, so I explained. He thought that apartments were where people went who could not pay for houses. The rent idea disappointed him for a minute. He had to think hard about it. Then he brightened and said that he plans on creating his own roses and his own packages to send to people... and with that he continued moving things into his room. Did I mention he is 5? What is he going to do when he is 16?

Things are progressing with my treatments. So far so good... my tumor marker has stayed at 19, anything under 40 is considered "normal." Though I don't think even knowing what your tumor marker is should be considered anything remotely "normal." So, we proceeded this week with the Herceptin and Zometa. Unfortunately, I found that the new combination makes me feel like I have the flu for a few days—nothing near as bad as the Taxol—but still flu-ish. Plus, I lose a couple of days because of the heavy Benadryl they have to give you for the Herceptin. It knocks me out and makes it hard for me to concentrate. On Thursday I had to reset my password 3 different times because I could not remember it from minute to minute.

I also met with the lung specialist to go over having the procedure done to remedy my fluid problem. At first he didn't recognize me from our initial meeting. I refreshed his memory by saying, "oh, the last time you saw me I had hair and cancer." He laughed… and remembered. I could tell he was taken back a bit by the fact that I was doing so well. Just a look and one of those extra-effort , long slow, blinks of the eyes people do... then a slight turning away from my gaze as he said with a slight grin, "yes, I remember you now... wow... I'm glad it's worked so well for you."

The procedure sounds easy enough. A small scope, small incision; they look around some, pick off anything that looks like it could be cancerous and then blow some sort of magic powder into the space that seals it up. The only bad thing is that it can require anywhere from a 3 to 10+ day hospital stay. It all depends on how fast the lungs stop draining fluid. Some people stop in 3 days; some stop in 10 and anywhere in between. Some people it doesn't work at all. He thinks I'm a good candidate though and that it would work for me. I'm terrified to pick up and leave everything here for a potential 10 day hospital stay. Especially with my son taking his own apartment... lol.

Kidding aside; that makes it hard. It means potentially that long away from my business whose survival right now is shaky. My illness, the seasonal summer slow down and economy, which seems to now be causing even my customers to buy more conservatively, are taking a toll. We are starting to have our usual fall upsurge in business; but it feels like the wrong time to take off. Plus, I have never been away from my son for a night. Actually before this he had never even had a babysitter. That's my fault. I never found anyone or anything that I wanted to do more than be with him. In his first 2 years I had a nanny and on occasion I would leave him with her while I ran errands; that's about it. I haven't dated, He hasn't spent the weekends with Dad or anything like that. It's been me and him. He's never been away from home for the night without me, never had me gone for the night. And until recently he had never woke in the morning without me here. Things change. It scares me. I don't want it to be scary for him.

Linda can run things for me. But that is a lot of pressure to put on her especially with her own physical problems going on now. And I can tell the thought of it frightens the new nanny. Though she is handling things so well... I can't blame her. Being "in charge" and alone that long would be a challenge. So I'm putting it on hold for just a couple of weeks while I can hopefully stabilize the situation some.

The lung doctor also finally explained some things to me that had been puzzling me. I didn't understand how I could be still accumulating fluid. He said that our bodies create a lot of fluid all the time, and that our lymphatic system takes care of it. But if some of our lymph nodes get blocked up with cancer; the fluid has to go somewhere. And in my case it went to the pleural space. The pleural space is the space between your lung and the case that the lungs rest in; there is probably a better way to explain it, but I can't think of it. It sounds like a sneaky space for fluid to creep into if things aren't right. So I questioned why they never found cancer in that fluid and he said that there may indeed be no cancer there; just fluid that had no where else to go.

I have noticed a great slow down in the accumulation now. My lymph glands must be working. It's been more than 6 weeks since I last had the fluid drained and Dr. Johnson said he doesn't think I have much accumulated there. But I have had some breathing difficulties. It may be uncontrolled asthma or something else. Bottom line is I need to have the procedure done to prevent the problem, should I the cancer come back again. Ugh... there are lots of things now that I will be doing "just in case." I'm planning on getting my teeth overhauled, getting my body in the best physical condition I can, my diet healthy, all those things you are supposed to do to prevent cancer, I have to do with ferocity.

My son has now moved nearly everything he could drag from our living room up the stairs to his bedroom. He stopped long enough to inform me that he plans on staying in his room for the next 5000 days. I said "okay." He keeps picking things up hoping I will notice. He took my purse. It's so hard not to laugh. Oh man, what do I do now? Hmmm? Will somebody tell me that? Do I wait for him to eventually come out of his room? Send him a bill for rent?

I am getting a little stronger day by day. I'm up to about 8 minutes on my elliptical. That's not a lot; but considering not too long ago I could barely stand for more than a few moments... I'm thrilled. I found 2 books that finally made sense to me. One is called Healing Cancer through Nutrition and isn't so radical that you have to give up western medicine to follow their guidelines. It mostly goes into a low glycemic plan that is very doable for me. I have even managed to lose my 1 pound per week! And I also found a book called Cancer Fitness, which gives great advice on getting strong again during and after treatments. It is written by an oncology nurse, who is a breast cancer survivor herself. She has been studying and developing programs for people that are cancer survivors who want to remain physically strong. I found it very encouraging.

My hair is growing back. And wow… does it itch. Crazy. The hair on my head is about 1/4 to 1/2 inch long now. It is 50/50 white and black I'd say. When I look at myself in the mirror now I think I've aged through all this. I look like one of those "great looking for 50-something" women. I'm 46. I think I've aged 10 years. I almost have eyebrows back too!

Eventually my son is going to get tired of this right? He's carried several books up there now and even some boxes of things I was going to eBay... he just came down and said he will be done moving things in a couple of hours. Then he grabbed my grocery list and a clean shirt and headed back up. On his way he announced back to me that "I took your purse Mom, so I'll have plenty of money." Oh... I'm sooo in trouble. Help me.

For entertainment purposes only.

Here are some odd things I have not yet put in my blogs... for entertainment purposes only:

* Shortly after I was diagnosed I had a blessing from a Native American Medicine Man. In this blessing he said, among other things, that I would have many Elders showing from spirit to help me get well the next night. And when they did I was supposed to show them out and give them tobacco. I sort of forgot about it. The next night our lights started dimming and going bright over and over again, so much so, it scared my son. After a minute I though "oh... it's them..." and so when the lights would dim I would go open the door and say "here's some tobacco for you." I felt sort of stupid because I had no tobacco. One time I was sort of laughing at myself and said "here's the door and I really don't have any tobacco." I swear I heard a voice say, "We know, we brought our own." This continued through the night. There was quite a crowd on my front lawn. My son still sleeps with a flashlight by his bed.

* While waiting for my diagnosis I consulted 2 psychics that I know, and consider friends. Both said I did not have cancer and that they thought it was some sort of infection. I recently read that they are now exploring research approaching cancer as an infection.

* Once, while giving my son a bath, he said, out of the blue, "Mom will we ever be the same?" I didn't know what he meant. So I said "do you mean will we both be grown-ups? Or will we both be boys? What do you mean?" He says "I mean like we used to be when you were not sick and you could run and play with me... and our house was clean."

* None of my doctors are cute enough to be crush worthy. This makes me feel cheated somehow.

* My son used to be a big geography buff. For a long time I had a map of North America on the bathroom wall to entertain him while he took a bath. I used to sometimes catch a glimpse of it in the mirror backwards... and I often thought it said Cancer instead of Canada. Freaky.

* In 1971 President Richard Nixon declared a war on cancer. He guaranteed the American people a cure in 5 years. For some reason, this fact makes me laugh.

* I get this magazine called Family Fun. It has a "Mother of the Month" in it every month. I want to be nominated for the sole purpose of being able to answer the question, "What is your time saving tip for busy Moms?" with "I save about 45 minutes per day by not having hair." Then on the question, "What is your money saving tip?" I want to answer, "See that hair thing..."

* Shortly after my first chemo treatment my father came to me in a dream. In the dream I was very upset and my father had come to comfort me. I asked him what was going to happen and he said, "don't worry, it might give you some trouble for 4 or 5 years and then you will be okay." He then took me in his arms and I cried for a long time while he held me. When I woke up, I remembered the dream. I was very comforted by it; but at first I was upset about that 4 or 5 year thing... it seemed like such a long time. But then I got over it and realized that I can put up with 4 or 5 years and then be fine. I was actually quite happy about it. Interestingly I was on chemo for 4 or 5 months...

* When it became clear that I was going to have to spend some time lying in bed recuperating, I asked Linda to buy one of those big pillows that makes you sit up in bed. You know the ones with the arms on the side and a backrest. She came back with a giant dog bed—because she's cool like that. She said she couldn't find anything like I was talking about so she hoped the big dog bed would work. It did, as long as I folded it in half and then propped some more pillows on it. It actually worked quite well... then she finally appeared with the appropriate pillow a few weeks ago with a triumphant "look what I found!" She would like the dog bed to give to her dog now. I'm thinking of sending it to John Edwards. What do you think?

An up to date article on stage IV breast cancer survivors.

http://www.curetoday.com/currentissue/features/feature1/index.html

While this article focuses on 3 women who had a "recurrence" that put them at stage 4, I still found it a great read. If you care to learn more about my disease and have the inclination; it's a fairly entertaining, short and uplifting article. I'm one of the 5% that had the initial diagnosis at stage 4; that makes me one of about 7500. That's pretty rare eh? Damn. I bet I'm a statistic in someone’s study somewhere and probably don't even know it. Ah well... that's okay... because it's working.

I really liked the last quote about making sure the last check bounces. It made me laugh and at first I was like "yeah, yeah..." but then I remembered; oh noooo... I need to leave something behind for my son... unless of course he reaches his economic potential before my demise... wow... that's the new prayer. To the universe and powers that be -> "I intend to live a life of abundance and live long enough to support my son until he is able to on his own." Whew... that's heavy.

"Let me be clear Londy, it’s still there..."

I had my first "chemo" today without chemo. I know that doesn't make sense but I'm so used to calling it that and I don't know what else to call it. Anti-Cancer drug infusion is just too long...

I received Herceptin and a new one call Zometa. The Zometa is preventative, to make sure I have strong bones. I don’t have any bone problems now; it is to help ensure I don't have them down the road.

And speaking of down the road, sigh, I had an appointment with the lung specialist a week ago. He was running 2 hours behind. So I rescheduled for next week. I also had another painful thorocentisis. And after the pain and effects wore off I only had a couple of days where I was breathing well before I felt the fluid coming back again.

This puzzled me. "If it's the cancer that's causing it, and the cancer is dead; why is it coming back?" ...was the question I posed to Dr. Johnson. I could tell this sort of threw him for a minute. Maybe he was surprised by the question; maybe he was fearful that I wouldn't go as aggressively after treatment... I don't know. But his answer, and the seriousness with which he said it, knocked me down several rungs on the happiness ladder. As he turned, adjusted his glasses and gave me a stern look, much like the high-school principal explaining to me how "everyone has to follow the rules," he says, "Let me be clear Londy, it's still there." Feel the air going out of the balloon... deflating... ah... shit. Oh yeah... I know.

So in my usual debater mode I say, "oh yeah I know, but it's not active. It's not seeking residence in other areas of my body, so how come?" He says, "yes, you are right, it stands to reason that it would not create fluid there again, but I think you should still have the procedure done to prevent it... we are giving you the best drugs there are, to give you the longest and best quality of life we can, but it's still there." Deflate, deflate. Shit. It feels like that time I was told the attendance policy applied to me like it did everyone else, and even though I had straight A's, I still had to go to class.

Bummer. I know that. Okay... will do. On the upside; he told me I am free to diet now as long as I only lose about a pound a week. And exercise is okay; but he doesn't want me to do anything too aerobic until the lung issue is properly addressed. All good. BTW; he listened to my lungs and said it sounded like maybe a tiny diminishment of capacity on my one lung, but actually, rather good. Maybe I'm not used to using my full capacity? It will all be for the lung specialist to address next week.

My infusion only took an hour. But it left me very, very sleepy and unable to concentrate. I tried to do some things after I got home and it was just a comedy. Before I had the steroids to pump me up before the treatment and then they would give me Benadryl during it. One counteracted the other. This time I only got the huge dose of Benadryl... wow... like being drunk. but not any fun. It felt weird. But as I was told; Herceptin has few, if any, side effects. So once the Benadryl wears off I should be doing good.

We picked up the new nanny last night. She is so far—amazing. I think this is going to work. My son really likes her and she has clicked in with his mind and playfulness... it's perfect. Hopefully with her help I can get things more back to "normal." Whatever "normal" is going to be for us now.

Yeah... normal. Sounds good eh?