Today I am cancer

Today I am just cancer, just a science experiment. I want to quit chemo so bad, maybe I wont have to quit, maybe it will just quit me. I can hardly enertain the idea of taking the poison pills tomorrow, I feel like shit today. I am nautious, feel feverish and my body aches. I dont want to do this anymore, today i feel like what difference does it make, i am dying of cancer, who cares when it is, why prolong the inevitable?????????????????? My dr said we will be at a "decision point" next visit, what does that mean anyway? i askd him that and he said we are always at a decision point after a ct scan, i think he means more, but wont say it, This is a pretty damned expensive science experiment and i am tired of being the center of it, my blood counts are lower than ever, but hey no problem, give her more chemo, i feel like noone really cares, nor understands the world i live in 24 hours a day, cancer is becoming me again and i hate it, if it is true that this is just the beginning and eternal life is forever, why am i fighting so hard to be here? im so tired of worrying about what i can eat and what i cant having so many cant eat thats, gotta eat this instead, this isn't fun in the least. i hate these damn pills and i hate ct scans and i now hate decision points, i hate lists that i make full of possiblities to take to the dr just to be told no, no no, that is only for your liver... it says even though we only see cncer in your liver we know you are consumed with it, so we suck your insurance money dry for the same result if you hadn't spent a dime, death from cancer. off to take pills to put me into a temporary 2 hour sleep, just to have that 5 seconds when i wake up and dont know i have cancer, then 2 hours of trying to go back to sleep knowing i have cancer, this can't be what life is about, it cant be............

Sometimes pride just overwhelms me...

The past few days have been some of those days. Last night I can't tell you as a Mother how proud I was of my son, Kenny. He has served on the volunteer fire dept in our town for the last five years, He has taken every class that was offered, gotten less than a hours sleep many nights while he was serving the people of our town on fire calls, he has stepped out of his comfort zone of being shy and went to the schools to educate kids on fire safety. He has been a volunteer firefighter. Way too much controversy has brewed in our town to the point of nepotism, where the father appointed his son as fire chief. It has been said that 18 of the 24 firemen had a problem with it, They went to the mayor, to the town council, and each time they were told to be quiet, they weren't going to be heard, no changes were going to be made, take it or leave it. Last night I watched my 28 year old son walk his gear across the street and make his final trip to the firestation and resign. I watched my son on television as he gave his interview, and the question asked of him, was it seems you are emotional about this, my sons reply was" This is very emotional. I can't begin to tell you how proud I am of my son for not turning the other cheek, for not laying down and being rolled over, and for not sticking with what he loved most because his safety was at risk with the new fire chief. My son loved firefighting, he did the thankless job of a fireman and I am so proud of him! I am also proud that my son stuck to his beliefs and resigned his position along with other firefighters last night. I hope one day when things change, he will once again be able to do what he loves so much, but am filled with pride that he stood up for his beliefs and resigned.
This has been another life lesson for me, I am his Mother, and I have taught him to stand up for himself and he showed me that last night. I am proud of you KJ, anyone can turn thieir cheek, but it takes a true man to stand up for what is right, I am filled with tears knowing that you are my son and I couldn't be any prouder of you! I have accomplished one of the greatest accomplishments ever with my son. I am sorry for a bit you won't be able to run like crazy when the pager goes off, things change and someday you once again will be able to do what you love!

I am headed off for chemo this afternoon, my blood counts are low but hopefuly ok for chemo. This makes round number 6, I will have a ct scan to see how much more shrinkage we have in two weeks.

The road of life, one year later

This has become my favorite picture, Norm took it on our recent trip to my sisters cabin in Wisconsin. It reminds me of the road of life. You never know where the road will lead, you can't see that far ahead, you never know how many twists and turns life will give you, just like the road, and you aren't even sure how many mailboxes you will have to open in life or what lies inside, good news, bad news, junk mail that is unimportant and can be thrown away or serious letters that will change your life forever. This picture says it all about life, or at least to me it does.

Today is the one year anniversary of the beginning of my knowledge of cancer in my life. In the past year I was on clear liquids for 18 days, shocked to be told my life could only be prolonged, not cured, went thru 17 rounds of 3 different variety's of chemo therapy and had one very long surgery. I could go into mountains of details, sharing the massive medical records we have accumulated, my entire story, but honestly, it's not important, what is important is I am still alive and my road of life is still continuing. The picture above says it all, we aren't sure if we will get good news of bad as we stop at the mailbox and we aren't sure how many more twists and turns there are in my road of life, we aren't even sure where the road ends, but today my road in life continues! One day at a time, one hour at a time, one second at a time, one breath at a time, this is how I have made it to where I am now with alot of help from God, my family and friends. Who would have thunk it possible one year ago today???

Blood counts

My blood counts are low as expected. I am starting to just expect they will be low until it's time for chemo when they magically or miraculously go back up. God has me here for a reason, I just have to figure it out. Sometimes it feels like I am supposed to suffer more, and then sometimes it feels like I am just supposed to learn how to live. My one year cancerversary is coming up in 5 days. It's almost scary, I can still say a year ago I remember whatever, before I had cancer. Soon I will need to say a year and whatever ago.It's all good, I keep hanging on, living and trying harder and harder to just make cancer leave my mind. If I can do that, then all is good.

I got to feel the hussle of rushing around last week to get things done, now things are winding down so i can take care of me. I spent half the day today looking for a certain photo which I didn't find, but I found some amazing pictures of me and norm, the grandkids and kids. It was fun going down memory lane. I have always not liked having my pictures taken until now, it's fun to find old pictures of me before I was sick and even seeing some and thinking maybe I was sick then, cuz I looked sick in some, my mind wonders how long I have had cancer, it's on my list to ask the Dr his best guess. I have been told by some for a long time, and by others short and very aggressive. Who knows, it doesn't even really matter, all that really matters is today I am alive.

We are closing in on Sarah's wedding Sept 19 and I am praying and starting to know I will be here. It is going to be amazing seeing my little girl walk down the aisle and marry the man of her dreams. I hope they have a long and wonderful life together. She's marrying her childhood sweetheart, isn't that just awesome? I hope they are always friends first no matter what. I want her to know that he is her best friend in the world, and she should share everything with him, the good, the bad and the great and even the ugly. I'm glad she has found her life companion, afterall she'll always be my little girl.... Her bridal shower is this saturday and after that I will share pics of something I made for Sarah earlier in the week. I hope she likes it, I still believe homemade gifts are best.

Rosemarie, where are you lady? I am worrying about you, since your news of a heart attack and not seeing you post. My prayers are going out that your ok and just taking extra good care of yourself.

My legacy is my kids and the things in life you don't want to pass along

It's not easy being me. I don't have a lot of "things" I have never really been a thing collector. I have 4 kids, so I guess I collected kids. I always wanted more kids, but the ex didn't so I got my tubes tied and then had a hysterectomy as soon as I started having problems for fear of getting cancer. Otherwise I guarantee I would have had more kids when I met Norm. Norm has been a wonderful father to my kids through the years, and an even better grandpa to our grandkids.

I think the thing that hurts me the most about cancer and it is just occuring to me is the legacy I leave to my kids and my grandkids and generations to come. I leave them with having to be extra careful and watch every sign of illness they ever get as it might be cancer. They now have two generations of cancer, my mom, and their mom, me.... This breaks my heart. I can deal with it, I am glad cancer happened to me instead of to anyone else in my family, but it hurts so bad that I have to pass on the fear of cancer to the generations to come. I have to pass on, that no matter how careful I was, how I went for yearly mammograms, had a colonoscopy at 40, had a hysterectomy at 29, that I did everything I thought I could do to make sure I didn't repeat history, I still ended up with cancer.... I HATE this. I hate passing this on, and I hate that I just realized how real the fear is. My son has had heartburn forever, and I have been on him forever to see a Dr. and he cancelled the appt. twice and got frustrated over something else and was going to cancel the 3rd appt the other day..... I called him and made him promise me he would go to the Dr. He is fine, but it made it so real that I have put the same fear of cancer into my kids as I grew up with. My son was filled with the "what if" fear.. I know the what if fear so well, I lived it for over 30 years and I can't even change it for my kids, for my grandkids, for future generations. I keep wandering if my Mom had "the fear". But I keep telling myself, but I did everything I could do to prevent myself from dying of cancer.....they say my cancer doesn't test positive for hpncc, which is a cancer gene that is passed down, but that doesn't mean my kids won't test positive for hpncc, and even if they don't, they have to live the rest of their lives with "the fear", and they have to know and wonder just like I do and everyone else does, how did this happen to me and could it happen to them? My only wish for them is to put "the fear" where it needs to be and maybe, just maybe they can live to be 105. I hope my kids are careful when it comes to their healthcare, but I also hope my kids can learn to live without "the fear" controlling their lives the way I realize it controlled mine. Cancer teaches me a new lesson every day and I don't like this lesson at all.....

On the medical front, my red blood count and hematocrit are low, not low enough for my Dr to do anyhing about for now though. My white blood count and platelets have jumped back to close to normal as they always do the week after chemo. I just need to keep the faith that everything will stay good for the next two weeks. Chemo is getting tough, or maybe it is the blood counts that are making me feel bad. I have chest weirdness, shortness of breath and am tired alot. The numbness in my hands and feet are getting worse and well my memory is not so great. I pray that I can continue to tolerate chemo, that my blood counts at least stay at a safe point and I can continue to enjoy life, one day at a time.

This whole week has been nonstop busy, Sarah wanted me to make some sort of candle favors for her wedding, so I poured votive size favors, packaged them, labeled them, decorated them and am still working on them. I am so glad to be able to do something for her wedding which is coming up in just a little over a month! I found a gorgous dress today to wear to her wedding. I am so thankful that it looks like I WILL be here for her wedding! I am passing so many milestones that the Dr's said I wouldn't and each one makes me even stronger. This is the week we have triple birthdays. My granddaughters birthday on the 15th, My grandsons birthday on the 17th and my sons birthday on the 19th. My Mother and father in law will be down from Canada in 9 days for a month. I can't wait to see them. They were here when I was diagnosed, actually they arrived while I was initially in the hospital, and I swear they have had their car ready to go since they got back, they just kept saying you know we will come down in a heartbeat, and I know they would. Last year when they were here I was on clear liquids for 18 days so I couldn't eat any of Mom's good Canadian cooking, so I can't wait until a few weeks, when she has promised me she would cook for me:)

What cancer has done for me

You know, I have been thinking all day about how it almost seems like cancer was in my future. I have rekindled relationships with family I never thought I would be able to. I have become so close to my siblings, well it makes me tear up when I think of how touched they are by my situation. They never miss a day calling me, listening to me ramble and chit chatting with me. This helps me so much. It is so nice to see that my whole world isnt cancer, it's being so fortunate. It still amazes me how so many of you I have become friends with since my blog. Brenda, Rosemary, Lounge Queen, it is so awesome of you to put yourselves out there for someone like me that you've never even met. Then I have my candle customers, now friends, all because of cancer. Barb, Jackie, Kathy, Brandie, Kim, Nancy and Laurie. You gals are amazing people, I have sold you candles for years, but never in my wildest dreams did I realize how your words would come into play to help me get thru cancer. You have become, not just my customers, but my friends. It is amazing to me how many people have reached out to us. Norms work cooking for us, the random cards, the emails... how blessed I am in this world that doesn't offer me much hope, but for what it's worth, I have learned how many people care. I remember long ago going to a counselor with my ex and he asked me who I needed in my life, I remember telling him I didnt need anyone. I could do whatever I needed all by myself. I remember thinking this will come up again in counseling and it has always stuck in my head. That is pretty much how I lived my life before cancer. I could do whatever, by myself, I could count on me, and now my world is so much different. I need all of you, You have no idea what your few words you tell me inspire me to keep going.

I have to be honest, I have thought more than once about running away and dying by myself. I don't want to put my family thru what I remember going thru with my Mom at 14. I don't want them to watch me suffer, and like I say it has crossed my mind more than once just to disapear. I have talked to my family about the whole idea. I realize now, it's not my right to take those last moments away from anyone, it's their right to be with me or to walk away, it's their choice, not mine. It's rather strange the way you learn life lessons, and especially so when faced with a no win situation such as my cancer. My husband has taken the brunt of my emotions, my illness, and my not always so kind words. I wish I could take back much of what I have said, but I can't and I know he wouldn't have it any other way. When he says he would take the pain from me if he could, I know, he really means it.

As I said before I am the luckiest girl alive, ya I have cancer that will ultimately take my life, but I also have people that have touched my heart in a way I would have never known if it weren't for this cancer. I'm glad God is giving me the extra time to experience what I have. I also know I have been a huge pain in the ass, all I can do is apologize for that and hope that everyone understands. I want to bottle up everything everyone has shown me and hang on to it. I know I can do this in my heart, and I have....

How you can help

I have already talked about a treatment that is available in Europe that has shown to be quite effective on Neuronedocrine tumors, it is called LU-177. The cost with travel to get two outpatient treatments is approx. $40,000. The unfortunate part is it is made right here in the United States but the FDA has not passed it here. Here is a email address that you can write to them asking them to look further into passing this drug so that treatment here in the United States can be given. This treatment has shown great results in Europe for the last several years, It could cure me, It could extend my life, and it could give me longer quality of life. If you would please send out a email to Milinda.vialpando@fad.hhs.gov I would appreciate it greatly. Please pass it on to everyone you know. This would be a miracle come true if this drug could get passed thru the FDA in my lifetime. They are working on this in Texas somewhere but haven't even started clinical trials with it yet, Time is so valuable

Here are some reasons another poster cited on one of my cancer groups:
1) Effective for a larger range of tumor sizes than the very successful> IN-111.>> 2) Has been widely used to great advantage in Europe for a number of years,> with a very excellent record of safety and efficacy.>> 3) Many NET patients are going to Europe, on a regular basis, to get> treatments that could be offered here, and the financial incentive to keep> BOTH treatment funds AND the expenses of travel and lodcings in another> country IN the US should be very attractive. This also opens up treatment> options to the huge number of patients that MIGHT be able to go to Houston,> but could never afford to go to Europe.>> 4) The carcinoid/NET community is working with the Houston area in drawing> up plans for a 'residence' for patients in this outpatient therapy, and the> FDA approval of a new mode of treatment will speed the process and show the> ability of the community and the country to reach out to those of all> 'stripes' of cancer.>> 5) I, personally, am counting on the LU-177 treatment to extend not just> the duration, but the quality of my life.> ---------->> So, if you've got a mind to do so, or are wanting the LU-177 treatment> without the overseas flight, or are just planning for the (distant, we hope)> future, drop Ms. Vialpando a note in the next few days. Ask your friends and> family to do the same.>> It's something that'll do us all some good. EVERY option is a GOOD option> for someone, and our goal should be to have as many options as possible!!

Here are some additional reading on this drug LU-177
http://jco.ascopubs.org/cgi/content/short/26/13/2124?rss=1

http://www.prrt.nl/index.php?lang=en

Just a quick update

I know it has been a while since I posted. The last few weeks have been full of stress, hopefully the next few weeks will be much calmer. My blood counts were lower than ever on wednesday, but fridays blood tests were who knows, they drew from my arm and everything was great, then drew from my port when i asked how my platelets could go from 90 on wednesday to 140, and the results from the port draw came back low on everything, so who knows, they said perhaps it was because they flushed the port before drawing. I ended up having chemo on friday and we actually found a hotel, not cheap but a hotel right across the street, I was glad to have a place to rest, chemo really wipes me out. My blood counts are not great at all and now my Dr is saying he doesn't want to give me shots to increase my counts as they are seeing new research that says the shots have lots of complications, only problem is my counts can't continue to fall. So, we shall see how things go, I may decide to give myself a extra week before next chemo round if my blood counts stay low. I dont want the chemo to kill me off. Guess I am on germ patrol again.

In the life of cancer, you find people like yourself to talk to, they know best what you are going thru, and it scares me to even do that anymore. In the last 3 weeks, I have lost two wonderful gals that were going thru the same cancer battles as myself. It's not a good thing when everyone you share with is dying off.... it's depressing.really depressing. Both of these wonderful women were just 37 years old with kids, young kids. Life just isn't fair. cancer just isn't fair, as my daughter in law told me the other day, i feel like her, i want to jump up and down and scream it's just not fair. How do I say we are only promised today, no promises for tomorrow, but if that is true, how do you live today not knowing if there will be a tomorrow? i guess i can't even live out my own words of wisdom, because i have to live like there will be a tomorrow, in order to actually live today, does that even make any sense at all? I don't know how my family puts up with me, because most days I make no sense at all anymore, I am thankful they do though, i couldn't endure this alone.

New candles.. yup you heard right

All of the new fall scents including the Tami's cancer Kickin candle is now available on the website at www.grubbylandcandles.com I hope if you order a cancer kickin candle, you will like it as much as I do. Its one of those that you don't even have to light to smell, just open it and set it on your desk and you have awesome sweet spicy bakery scent. It's been my fav for a long time. Nancy, I have a free one coming your way for the idea, after all this is your brain child lady. I also have your book party stuff coming, I am just slow this week.

Also my wonderful sister Debbie is organizing a benefit for me. It will be October 18th in East peoria. Hopefully many of you can make it out, and if you want to help with it, please send me a email, I know Debbie needs lots of help to get it off the ground. I keep reading about a treatment that costs alot of money that is available in sweeden that has wonderful response rates so am goiong to talk to my dr about it. Obviously, insurance wont cover it, but I am going to check it out at any rate. The saddest part about it is it is made right here in the United states, but FDA won't approve it here yet so it could mean a trip to sweeden and a whole lot of fundraising to get me there and get the treatment. It is supposed to just obliviate liver tumors

I have been really depressed this last week, or maybe two, I can't even remember now. Somedays it's easier to cope than others, and this has just been a tough week. I get blood tests tomorrow to see where my levels are and then will talk to the nurse in chicago to see if I will get chemo this week or not. Normally, the cancer society gets us a hotel for cheap, but not this week, and even on hotwire the rooms are rediculously priced, so if I get chemo, I am going to have to suck it up and go right up and right back home same day. I doubt chemo will happen this week, but tomorrow will tell. I have been on germ control so havent been anywhere, but have had Skylar my grandson here a couple times this week so that has helped me alot. He is about to turn 9 and is such a sweetheart. Well, it's late and I am watching my grandson sleep, so guess I better head that way too. Grandkids are truly the innocence of life, I am so lucky to have my grandkids. They keep me going even when things get tough,

Just talked to the nurse

She said she really isn't that concerned about my results, My Dr really doesn't like to give the shots to boost your white or red blood counts. She pointed out that I have bounced back before, so let's wait and see where things are next wednesday and then go from there. She said they can always give me a red blood count shot at the same time as chemo next week if need be and if I have problems in the mean time with the shortness of breath or darkened stools, to go to my local oncologist. Funny, I haven't heard a word from them since I haven't been going to them for treatment. The bitter side of me says, whereever the dollar goes, so does the care.

As is cancer, I suppose as is low blood counts with chemo, just part of it I have to learn to be ok with, at least I still have life, and that is what truly matters