Lookie here..I am bloggin

I thought it was time for a post from me. I have a hard time typing with the numbness in my hands so it takes forever to retype all the words but here goes.
We got even more news, from the octeroscan, it shows positive for the receptor that shows octerotide will work along with my other chemo so they will be adding that in next time. I have heard some horror stories about insurance not wanting to cover it, so hopefully that will not come to be, our insurance has been wonderful so far, praying it continues. So one more drug to kill off this cancer is a good thing. Not sure of side effects, etc on that yet

This chemo round has been much better than I had been expecting. When I feel bad I feel horrible, but that is only about 5% of the time, the other times I am wonderful. Have even been doing some household tasks and making my way out to supervise the pool boy Norm.

In many ways, maybe because I feel better, I am trying to live with cancer instead of die with cancer. What I mean is I am actually trying to live again, it feels good to the soul, heart and mind, It may take me one day but not today, today I choose life. I even got through memorial day without crying. Thats a first holiday with no tears from me.

We will head back to chicago next friday june 6 for second round of chemo with new addition chemo, so hoping it will go well.
Live strong everyone, we only have today, yesterday doesn't matter and tomorrow may never come so live strong for today.
Thank you all for your comments and offers to help. From a few posts ago, yes Sarah is an angel. I can't begin to tell you how proud I am of her as I am all of my kids.
Ok, hands are giving out on me, sorry for the abbreviated words, but it's all I can handle for now,
Pray for this chemo to do it's job and kill off this cancer and also to keep my mind strong, and my families minds stong during this time. My family needs the prayers as much as I do, this is so tough on them. I love them so very much

The Results are in...

Sorry for the delay, I know I should have updated this sooner, but between puter problems and messin with the pool I am just now getting to it. Anyways, we got the report from this scan, it pretty much mirrors what the CT scan showed, no cancer anywhere but the liver. This scan is similar to a CT as things less than 1 cm will not show, but this is very good in that they did not see anything anywhere else. Now if the Chemo does its job maybe we can focus on the liver itself.

We've had a good Memorial day weekend, we went to Sarah and Josh's engagement party on Saturday, it was a nice little get together, and Sarah looked beautiful in the dress we got her for it.

Also Saturday, much to Tami's dismay I tackled the pool, there was a hole in the cover so the nasty green swamp water that usually stays on top of the cover was all over inside the cover. After 22 gallons of bleach and lots of work ( I am the pool boy) we got it to a nice shade of light green, not there yet, but getting better, a lot better than it was.

Sunday we had a nice little cook out with the kids, so all in all starting with the results it was a decent weekend. Hopefully the sign of things to come.

Scanned and back at home

Tami is back at home as of last night, all scanned up and waiting for results. Seems like is whole ordeal has been waiting on the next set of results. I know Tami went into what she was having a few post back, the octreoscan will show how many neuroendocrine tumors she has and if they have the "receptors" that will accept another time of Chemo that specifically targets neuroendocrine type tumors. You can find out more about this scan here.

Tami still seems to be doing well after the Chemo, the previous side effects seem to be creeping back, but for the most part she is doing well, all things considered. We should find out results on Friday of the scan, I am not sure how the results will be spelled out and if we will need a doctor to translate them, but we should know what she has going on, or at least a better understanding.

I'm just glad she is home, I know she has fun with her sisters, but I need her back at home, I need to be instructed what to do next, with no one at home I often get stuck in the corner and don't know how to get out :)

Will post again Friday after we hear some more on what this scan shows.

I wanna new drug....

So Tami asked me to continue her Blog for awhile, she has started the newest Chemo and is feeling kinda crappy with it all. We decided to go up Thursday night and stay the night Friday after Chemo. Me, Tami and Sarah went up. Thursday night, we got up there, got settled into our hotel and decided to go out to eat. Tami's sister Debbie suggested PF Chang's, a Chinese food restaurant, and it did not disappoint, it was very good food, and reasonably priced as well.

The next day we walked over to Northwestern, it is a very nice facility, with very nice people. So far I have been nothing but impressed with Dr. Benson and his staff, and that for me is saying allot, because at this point I cant really stand doctors at all. The treatment rooms are private, and had a bed instead of a chair, now its not me going thru this, but I am pretty sure the bed is more comfy than sitting during chemo. The day one chemo took only a few hours, and went very smooth. Tami even decided to walk back to the hotel afterwards, I am so proud of how strong she has been through all this, even though she doesn't always see it, she really has been very strong.

Friday night she felt a little under the weather, of course to be expected, I am glad we decided to stay the night and not push things driving home that night. Me and Sarah went out and grabbed some food from California Kitchen Pizza and brought her back some. We left out Saturday morning about 8:30, Tami started Day 2 of chemo in the truck by taking the first of 6 rather large pills as we drove home, she has 6 pills to take on day 2 and sic on day 3. On Saturday she took one an hour till they were gone, and on Sunday 1 every half hour. All and all it went ok, she feels run down and tired, and off and on nausea.

Last night (Sunday) I took Tami up to stay with her sister Deb, she is going to have a scan done that has to be done over 3 days. Today she gets injected in the morning, and then a 1.5 hour scan. Then tomorrow and Wed she gets a 2 hour scan. This scan is to determine if the cancer she has, has the receptors to make another chemo drug effective. Something that should have been done a long time ago, including by Mayo, but I am sure Tami has mentioned this, so I wont beat that horse anymore.

As a side note, I want to add a little story, I was gonna call Sarah and tell her about this but I chickened out, thought she would get a kick out of it as she had a similar thing happen a short time ago. Saturday, I had a bad moment, and I went and sat out on the deck, I am not a very religious person, I believe in something, but I am not sure what that something is all the time. I say a prayer every night, but I dont always get the feeling anyone is listening. So as I sat on the deck I was staring up into the sky and I thought to myself "why cant I just get a sign, why do others get signs and I never get anything, why cant someone just point me in the right direction sometimes" I guess I expected the clouds to reform into my answer, of course they didnt. I went back in the house. Now last night, on the way home from Deb's I drove past this church, now most of the time you see those signs sitting out front and they have these stupid little goofy sayings that are meant to catch your eye, or whatever. Last night I drove by this church and all it said was "Lean on me". Now this sort of socked me in the gut. This has been something that has caused me some issues in the past week or so, and really since all this happened with Tami, not knowing if and who to lean on for support, not wanting to burden anyone with anything I was struggling with. So here I am driving past this church and there is an answer as simple as three little words on the front lawn of some church. So either I share this and everyone thinks I am crazy or full of it, or I get to be part of a small club that if not got their first sign, at least saw it for the first time. Maybe it was nothing, sure felt like something, and every other church I looked at after that had just some stupid little saying on it.

Anyways, for the next little while you poor people are stuck with me updating again, least till Tami feels like typing some more, I will try and not spend alot of time talking about myself though :).

Keep the responses coming, Tami loves hearing everything that everyone has to say. Oh, and dont be shy, put a name at the end of your response so we know who is responding!

So I won the cancer lottery.. go figure

That's right, I won the cancer lottery, it's official I have a very vry rare cancer that effects 1 in a million people. It is called small cell neuroendocrine cancer with unknown primary which means they don't know where it started, it is not colon cancer as we had thought. This is the best news I could hope for for my kids as this shouldn't pass on to them. I dont want to see anyone else in my shoes, cuz this sucks so bad. What's the saying you can't plam life, it just happens? I am going to chicago tonite to start the nasty chemo tomorrow morning. Then next week I will have what is called a octeroscan that only shows neuroendocrine tumors so will know the extent that I am covered in tumors, we do know that my liver is indeed filed with tumors and I can tell by the pain that I am having now. I am also having horrible tailbone pain every day, so I imagine it is also cancer. All I can do now is continue to fight, continue to put my life into God's hands and continue to be glad that I have a loving family to help me through this battle and wonderful people out there that care and also pray for me. I know someday, somehow, somewhere I will beat this cancer.

I may turn the blogging over to Norm as this new chemo starts, at least that way he can keep everyone updated.
I pray to God noone ever goes through this.

A update and the dick whipper story

As most of you know candles are my life and profession. Most of the business is in home candle parties. Well you just never know what kind of crowd you are going to walk in to and this particular day the crowd was a tough one, very quiet and reserved group of middle to older age ladys. Kristi was doing the presentation but I was along to do the running. Well as she picked up the wick dipper to explain what it was and how to use it, she said this is a dick whipper, complete blunder of words on her part. She turned bright red and we both knew not to even look at each other or we would bust out laughing, the group of ladies never even blinked. I am sure many of them caught what she said but Kristi just carried on. As soon as we were out the door, we were both laughing hysterically at her blunder!

So we went to get the results from the ct scan today. There is progress in the liver, the largest tumor is now 5 by 5 cm. It was 4 cm before. They do show multiple tumors in my liver. they do not show anything anywhere else so that is good news and best of all, He agreed that this doesn't look like small cell neuroendocrine cancer, as that cancer we would have seen major progression, soooooo we are putting a lot of eggs in Dr Bensons basket on friday hoping he has the answer. Dr Migas also said this is probably the worst chemo they give at his office, so I am very scared, but ready to get it done. It scares me ALOT that I could lose my hearing... well alot, alot alot. So the results are both good and bad. I didn't expect to walk in to a miracle of no cancer anywhere, but I wasn't prepared for multiple lesions on my liver. I have read that some of this could be inflamation from where they used radio frequency ablation on my liver, so that is a bit of relief. I am ok with this, it is what it is, and I can only continue to move forward, Please keep us in your prayers and thank you for all the prayers.

So I am a drug addict

My newest dilema. I am a drug addict, not to illegal drugs but to percocet. They gave me this after I was discharged from the hospital for pain. When I went back down for my recheck they gave me another prescription which I filled, they said call a week ahead so we can mail you a prescription since it is a narcotic it has to be a written prescripton. I called last week. After a few days of no returned phone calls,etc, one of the residents finally called me back. She wanted to know whyI needed a prescrip so fast, so I explained the whole thing again. Yesterday the prescription arrived... it is dated for May 10. Yesterday I felt kinda weird, like I was going to pass out, just not right, and ya I had cut down on my percocet as I was getting down there in pills. So today, I know I only have 2 percocets left, so don't take any. Again this afternoon I feel that " I just don't feel so great feeling, jittery, anxious and I think hmmmmmmmmmmmmm I wonder if it's from not taking the percocet, so I look it up on the internet and it clearly says do not just stop taking percocet, you may have withdrawel symptoms.... so I am thinking yup this is what is going on. I call St Louis and say thanks for the refill but it is dated wrong. My local oncologist doesn't prescribe percocet, so basically I am going thru withdrawel on top of everything else, oh yeah! I guess if it gets worse I am going to go the e.r. and see if they can give me a prescription for percocet to get me thru until the 10th. I wish someone would have told me you can't just stop taking percocet, but then again I wish the Dr would have written down a correct date on the prescription. So, it's official I for the first time in my life am wondering how I can get my fix of percocet... all I can do is laugh about it,

CT Scan tomorrow

Well as I sit here enjoying my first quart of barium, I thought I should post. Unfortunately, the computer and even my home have become the cancer computer and cancer h0use. We bought our house a few years ago and totally remodeled it and I loved my house, now everywhere I look, I see reminders of cancer. I want so badly to put away all the cancer records, sterile pads, medicines, appt cards, but it's not to be so I enjoy getting out of the house. The computer has become my research tool for cancer, most emails are from newgroups about cancer.. Could be worse I suppose.

I am scared for tomorrows ct scan, afraid it will show massive cancer but encouraged it will just show those two places on my liver. I have grown this fear of Dr's, seems all they do is tell me how bad it is. I pray for good results on my ct scan on wednesday and pray even harder that this specialist will give us something to hope for. I was talking to my friend Liz tonite and I told her it's like we are waiting for the pot of gold at the end of the rainbow. It wasn't 30 minutes later, it rained and out popped a rainbow, please let this be a sign. We are running out of chances to find that pot of gold. I just wanna keep fighting this disease back, that's all I want to do. I refuse to believe God brought me all this way to drop me on my head now.

Thanks for your comments, they really do help me to make it through the day somedays. Nancy H if you read this can you please send me your email address again? I have lost it and know you changed it to a new one.
Thanks everyone for your continued prayers, if anyone can get me through this, it is God. He has all the answers

The way it used to be

First of all I notice there have been very few comments on my blog, I am sorry it is like a train wreck where you just have to look but can't utter the words. As my pastor said the other day, sometimes people just don't know what to say. For those that still comment thank you, your comments continue to make my day. For those of you that just don't know what to say, just say Hi, It's ok, I wouldn't know what to say either.

I had a dream this morning that I was working at Dixie, busting my butt, stressing out. Damn I miss those days. I miss my candle business so much it brings me to tears. I miss being busy, the hustle and bustle of normal life. When things get crazy in your life, don't dread it welcome it, you never know when it will all be in the past. I wish so badly I was making candles, preparing for candle parties and taking all those candle calls I used to get. I miss finding new scents and I miss my customers. Don't take a second of life for granted, take time to enjoy what you are doing.
These days it's Dr appts, CT scans, sleep, pain and the uncertainty of the future. That's whats on my agenda. Live life while you still have it in front of you, love those kids, hug those grandkids, and kiss that husband, never miss a chance to tell everyone how important they are in your life.

I have a ct scan on tuesday so am nervous about that. What will it show, does it even matter? Will this Dr have a new diagnosis for me? I read last night about someone that was diagnosed with small cell neuroendocrine cancer and when they went to a specialist in carcinoid cancer, they were rediagnosed, the pathologist hadn't stained the slide for carcenoid and they werent sick as they should have been, pretty sad when I am wishing for a "better" kind of cancer. This just plain sucks, there are no words to describe it.

My husband and my kids are starting to realize that it is what it is, in a way I am glad as they need to realize it and in another way i just want to sheild them from it all. I just want cancer to go away, I wish this cancer would run for the hills so I don't feel like I need to.

A few thank you's I need to get in that are long overdue. Nancy, thank you so much for the spa blanket, it is wonderful, and you are so sweet. Jackie, thank you so much for lighting a luminary for me in California at the relay for life there. You are precisious to me. Laurie, Sherri and Sarah thank you for continuing to believe so strongly in Grubbyland Candles by taking on those candle parties. My sisters, Debbie and Sherry, thank you so much for calling me every day, thank you for taking me to Dr appt's and overnite trips. Thanks Debbie for rushing to St Louis just because i needed a bully to get the message across to the Drs. Sherry, thank you for slaving over the hot wax pot to continue my dream in Grubbyland Candles. Thank you Norm for every day you help me to live, I'm sorry I made you make all of this real in your mind, but I had to, it's just not fair for you to endure this alone, I love you all forever.

Please pray for me to be able to continue to put my faith in God, I know he has a plan for me, I have to continue to trust him and know he will carry me through all of this and if in the end I am too sick, he will take me to heaven,