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?

I fell into a big bucket this time...

I haven't blogged much lately. There seems to be problems with the blog system. I've written a couple of blogs only to have them disappear into a black hole.

Things have been very interesting since I received my good news. Much like the unexpected responses I received from people around me when I was diagnosed—I received unexpected responses to the good news too. I think that until you have lived through something like this; you just have no idea what it's like. I realize that some people just got their mind wrapped around the "stage 4, she could die" reality; only to be hit with a "the cancer is dead... she's gonna live" reality.

I had good response to the medicine, and it was fast. I could tell even my oncologist was a little surprised. Happy, pleased, proud... and just a little surprised. I was surprised too. I expected good results and I knew I was responding. I expected some sort of "half-gone... it's working, a few more taxol... surgery... blah, blah, blah." The completely clean PET scan brought tears of joy to my eyes. I can understand why it might cause some disbelief and "wft?" in people who are not around day to day and perhaps don't share my belief in miracles, the power of intention and magical red twizzlers.

I had some questions from people upon hearing the good news, along the lines of "well then the original diagnosis must be wrong." Nope. No mistakes there. And a few "did I misunderstand, didn't you have..." Yes. I did. And no, you didn't misunderstand. Along with a few "well you were very determined," as if I somehow killed the cancer myself through sheer tenacity and stubbornness. There were also a few comments that left me with a feeling of "gee are they upset I had good news?" Like I had committed some crime and got off too easy... um... okay. Yes, I am lucky. I know I am lucky. I once had one of my former bosses tell me that I had the "uncanny ability to fall into a bucket of shit and come out smelling like a rose." Yep. That's me. Ironic I sell roses now, eh? I just wish I would quit falling into that damn bucket of shit.

Here's the thing; I feel like the big battle was won, but the war isn't exactly over. I still have cancer in my body—dead cancer. That, in time, will diminish and go away. There is still medicine to be taken and I will be on anti-cancer medications for, most likely, the rest of my life. I will still be making trips to the hospital for Herceptin, which has to be taken intravenously for months to come. I still need to have my lung fixed so the fluid stops accumulating. I still need to get my strength back. I've got a long road ahead. I've stopped the freight train that was speeding at me; now I have to continue the hike up the mountain.

And speaking of mountains; I still have that mountain of medical bills to figure out...holy crap! Chemo ain't cheap. Nearest I can tell each treatment I had was in the 12K range. PET/CT scans run about 6K, I also have had many, many x-rays, procedures... wow... it's mind boggling. The stack of bills has grown beyond control and I'm already being called by collection agencies for some of the first procedures. Yikes! And it's going to be never ending. I have 80/20 insurance. I have to start selling a lot of roses—fast.

There is still a possibility that cancer will pop up somewhere else in my body and I will be constantly monitored for just that occurrence. That is what stage 4 is; it's not curable. It's manageable. And until something comes along that is a valid "cure" I will remain stage 4—incurable. There are a lot of people out there just me like; incurable—waiting for the cure. I'm going to be happily, joyfully, gleefully and thankfully smelling like a rose while I wait.

Negative? Whachyamean negative?

I wrote this amazing blog today while I was getting chemo. I tried to add a picture and whamo... error. It would not post and it lost my entire blog somewhere.

So I'm going to do a fast update in hopes that it is found sometime soon because I know a few of you are waiting for this news.

I got the results of my CT/PET scan today. And for the first time I can even remember, someone said I was "negative." Not a word that gets used around me very often. Usually I'm the optimist or just unrealistic. Today I was "negative."

My PET scan showed nothing. It was NEGATIVE!!!! In that good way. My cancer had no response to the test. It's still there in structure, but it is not growing, not active, pretty much dead. The CT scan showed the structures there but greatly diminished.

So today was my last chemo. I no longer will have the Taxol. The Taxol is the one that causes all the side effects. So no more drop in white blood cells and high risk of infection. I can go to the dentist, maybe get that lung problem fixed, the yeast in my eyes will go away, the sore throats will go away, the aches will go away and my hair will come back. I can diet off the weight I've gained during chemo, exercise to get my strength back. TahDah!

I will continue on Herceptin for awhile and start on anti-estrogen drugs. No surgery, no radiation. Dr. Johnson wants to see how much we can shrink and sees no need for anything like that for now. If something changes and it wakes up again and gets active that may change. For now we want to see how much more we can eliminate with the drugs. I asked him if it ever goes completely away with just the drugs and he said "yes, but not very often." I told him I intend to be one of those people. He smiled and said "okay."

I asked about that word we are used to hearing, "remission," and he explained that there are two types of remission. Complete remission and partial remission. Complete remission is when there is no cancer left to see on a CT scan; like it never happened. Partial is when you have the structure there, but no activity. So I'm in partial remission. I could also tell he didn't like to use the word remission too much.

So now what I need to do is concentrate on getting the dormant cancer to leave my body. I'm not sure how that happens. The body must take the dead cancer cells away and get rid of them... I'll do whatever it takes.

And like my sister, who surprised us with a short, drive by visit the other day said, "I guess I'll be seeing you around then Lon..." Yes, you will, you most definitely will.

Happy normal 4th of July!

Hope you all had a happy 4th! We enjoyed Linda's version of my dad's famous ribs. They were awesome. Smokey played in his custom, built by Uncle Lee, top of the line, sandbox. We tried lighting some fireworks but that didn't go so well...

I haven't had much chance to blog this last week. I can't imagine how my life got so busy. Oh yeah, duh. I have cancer... or had???

Before my last chemo treatment I had a blood draw to determine CBD and also a tumor marker report. And... my tumor marker is normal. Yes, normal. Lee was with me and he said something like "wow, normal isn't a word used to describe you very often." This comment got a bigger grin from Dr. Johnson than I would have expected.

My marker came in with a score of 38. Below 40 is considered normal. Oh sure, I know you are going to ask "what did it start out at?" And guess what? I don't know. Lol. There is no beginning marker recorded in my chart at the oncologist’s office. I don't know why. Susan the nurse sort of explained that by saying that "it didn't matter much what it started at and besides it is only one of many factors they look at." But she said that a normal marker was "good" and that I may only need a couple more chemo treatments. Yahoo.

As a result of this great news Dr. Johnson scheduled me for a CT/PET scan next Thursday to see just what has occurred to this point. I get to go back for another ride in the 3.5 million dollar trailer.

I have to tell you that they were very cautious not to let my reaction to the good news get the best of me and it was down-played a lot... understandably. They don't want to get hopes up and/or make me think that it has all disappeared when there is probably still some there to worry about. But I don't care. Good news is good news.

I'm also now looking for a nanny... again. This will be nanny number 9. If anyone knows someone who might want the job... email me. I arrived at the nanny idea yet again after the demise of my cleaning girl and Linda maybe having to have surgery on her neck soon. Linda needs less to do and I already need more help—with her being out for awhile, it could get ugly. So it's easier to find a nanny to help entertain my son and do housework instead of finding someone to run the Jungle; at least I think... I've been through fewer nannies than employees over the years, so at least statistics are on my side.

We go through nannies as fast as we go through cookies because my son is such a high-energy kid. And he is always by far smarter than them... it takes a toll. I wish I could find a Lego-expert, geek that can also do the dishes and play tag. That's what I'm hoping for—someone that knows a Bionicle from a Jedi Knight, who can also load a dishwasher and run a little... that can't be that hard, right? Oh yeah, they also have to be germ free and not afraid of a woman with no hair...

Happy 4th!