It's a miracle

Miraculously, we got to chicago and my blood counts had all returned to within normal range. It could have been the tuna filled with protein I lovingly now call cat food but for now I'll just call it a miracle, and I will take every miracle I can get! The chemo is hitting me a little harder this time, just feel blah, nausea, pain, just yucky. One more day to go on the chemo etoposide pills.I never know how I am going to get thru the pills, but as everything else these days, it's one pill at a time and I am sure I will get thru them tomorrow somehow. We have a order for a ct scan I just have to call and get it scheduled for a few weeks from now. So I am really nervous about this as I have already talked about, so this is going to be a bumpy next couple weeks. I pray the results are good and we see tons of shrinkage in my tumors. Cancer is becoming a live it one day at a time and hope for tomorrow.

Sarah went up with me and Norm and it was nice to force myself to get up and about after chemo and do some walking around Chicago. It's nice to be able to just people watch up there and we sure saw some people to watch this time. Amazing!

I finally got the pictures in of last weekend at the cabin at the Dam bar, they look really small but then I realized if you click on the pictures, it makes the pictures bigger, give it a try if you didn't know, I am the sick looking one in the pics, dang it, one day I will look like the baby sister again, instead of the sick sister.

I wanted to include this one with this post as it just reminds me of how perfect life is. Daddy goose leads his babies with mama goose following close behind. This is another pic from last weekend at the cabin, just another wonder of life.

Need some blood count vibes

I went in for my blood counts today before we go up tomorrow night. My white blood count fell again from last week to 2.7 . My platelets climbed to a whopping 121 up 3 from last week. Normally with chemo your blood counts drop during days 7-14 and then rise again just in time for chemo, well my white blood count dropped from last weeks 3.4 so.... I am not sure if I will even get chemo this time. At first, the local Dr office said my blood was low but ok for chemo, then Chicago office said ummm no, white blood count is too low for chemo, let's try for next week, then they decided after confering with my Dr that if they don't drop more before Friday when I get my chemo, they could give me chemo. So, I am scared, I don't want them to give me chemo if it is too dangerous but know I need the chemo. My platelets have to above 100 so they are but what happens next time? I need prayers and positive go up white blood counts and platelets. Ugh, I can't stand the thought of having to go back up to get chemo another time. This has been my fear as I have read this happens alot with this chemo. I try to eat lots of protein, even though it's not proven to improve your blood counts, it hasn't failed me until now.
This journey is scarey enough without worrying they will give me chemo and then my white blood count will drop so low I will get a cold and get very very very sick from it. I have felt so good on this chemo, I have read the 3rd treatment is where you see problems like this and here I am. They can give me a neupogen shot but can't give me chemo for two weeks after. The nepogen shot would increase my white blood count. This is so frustrating, but I guess I am just going to to go up, have them check my blood and let them know if it's too low, just give me the neupogen shot to build up my white blood count and I will go back up in two weeks and have chemo. At least it's something they can fix. I just like to have everything go as planned. Just when I thought, I could just blow right thru 10 rounds of this chemo with no problems and feeling great. I have no idea what this will do towards the CT scan I should be having in a few weeks if I cant get chemo, much less the cancer. I imagine I will have to isolate myself again. It hurt so bad when I had to tell my daughter Sherri not to bring the grandkids down tonite as my blood counts are too low to be around anyone... aw cancer rears its ugly head again.

This is the life

This weekend was amazing! It was so nice to get away without being stuck, cut open or chemo'd. It seems thats the only time I get away and so it was so nice to just get away to have fun. I got to show Norm "my" island and had a lot of fun with both my sisters and brother in law. Oh and I got my bloody mary too... at the Dam Bar. That was the name of the bar, isn't that hilarious? We took a boat ride up to the Dam bar!

I can't get the smile off my face at the name of the bar. It was wonderful to create new memories with everyone and it was nice that cancer pretty much got left at home. My sisters have gotten good at knowing when it's just time for me to get away, and as usual they were right again. It was so nice just to be with them. Last year we went up to the cabin, just the three sisters the first weekend of August and we talked about how blessed we were that all 4 of us kids were alive and healthy and how fortunate we were... little did we know that just 3 weeks later, our worlds would turn upside down with my diagnosis of cancer. I was a little worried it would be bittersweet for me at the cabin, but it never crossed my mind, only the memories we had from last year and how lucky we were to be there to create new memories. I will have Norm update the post later with pictures.

On the medical front, my blood counts are getting low. It seems the chemo is starting to do what I have read it would. I was so worried friday when I called the Dr's office that they were going to tell me I couldn't get away for the weekend, that it was time for lock down, but they gave me the ok. My platelets are down to 118. If they fall below 100, they won't give me chemo, but a transfusion instead so hoping they stay up enough to get chemo. My white blood count is also low, so hoping that goes back up. We live with hand sanitizer controlling our life, stinks, but if it works, it's worth it! My kidney function level is also low, something they also expect with this chemo. I just pray that my levels stay up high enough to get chemo this week. Scans will be coming up in a few weeks so we can see if this chemo is doing it's job. I keep praying for a miracle, but just hearing that the chemo is working will be good enough.

Word to live by for today from my friend Suzanne, thanks Suzanne, funny how things arrive in my life on just the day I need to hear them.
"Lost wealth may be replaced by industry, lost knowledge by study, lost health by temperance or medicine, but lost time is gone forever."
~ Samuel Smiles

My Island

This is my island. It is located in Moweaqua Wisconsin. I call it "my" island because I love it. My sister Sherry has a cabin in Moweaqua and this part of the wonderful view from her cabin. I find such peace and tranquility up at the cabin. We are going up to the cabin for the weekend in search of peace and tranquility. it should be a fun weekend with my sisters. Norm has never been to the cabin, but I am sure he will love it as much as I do. I can't wait to show him "my" island. My brother in law Dan is so sweet, everytime they go up, he always sends me pictures of my island. I am also having bloody marys this weekend. The doc cleared me for alcohol, so i decided to wait for my sisters to savor a bloody mary, maybe I will just get slouchy drunk:)

I can't wait to get away this weekend. cancer has been on my mind alot this week, knowing that a scan is coming up soon as well as chemo, wondering if the chemo is working and praying that it is and that is the reason I feel so good, rather than that it's not working and that is the reason I don't feel chemoized. I have been really depressed this week and know it will lift my spirit to get away. My stomach is feeling better, not 100% yet but getting there.

It must be tough being on the other side

I will never know the other side of this disease thankfully. I will never have to watch someone I love go thru this. I have known the other side many many years ago when I lost my Mom to cancer, but I was just a child then. I can't imagine how it must feel for anyone who knows me. I know that everyone handles it differently, I have friends that have never called, I have friends that called once, I have friends that call alot. I have family that connects constantly and I have family that connects once in a while. I have a husband that has to live with this daily. I really wasn't directing my last post towards my husband, just in general.

This must be a fine balancing act as far as my needs, somedays I can't handle regular things, and somedays I can. This must be so tough on those around me to try to figure out if today is a day I need to be needed or today is a day I can't handle any more, if today is a day I can do it all by myself or if today is a day that I need help.

Let me share a little about me and Norm. We met via the internet over 13 years ago. We talked for hours and hours, after many months of talking we met, I knew before I ever laid my eyes on Norm that I was in love with him, that he was my knight in shining armor. I put Norm on a pedestal so high no one could reach. Don't get me wrong, everyone is human and Norm hasn't been a exception to that but he has always been a loving caring husband whom I love dearly. He has put up with alot from me, the excess baggage I brought to our relationship and even my stubborn i dont need anyone attitude at times, but Norm has hung with me througout it all. he has always supported my dreams encouraging me along the way. Norm has been my angel on earth. My diagnosis of cancer has to be the worst thing Norm has ever been through and It has taken awhile, just as anything new does, but he has learned what I need and when I need it. He knows when to leave the dirty dishes waiting for me, and knows when to just take care of them. For a long time after my diagnosis, Norm felt he just needed to be strong for me and tucked his emotions away. He didn't want to put his emotions onto me, he thought I couldnt handle it. norm hid out from us, but pretended everything was ok, he has learned that I still am his wife and still need his emotions and can still handle his emotions. For awhile Norm acted like everything was under control, I suppose that was all he could handle at the time. He told everyone I was just fine when asked how I was even though he knew I wasn't just fine, perhaps to make it in his mind that I was ok. For a while he tucked it all away, he opened up to the wrong people when everyone close would have understood better. Again, no one is perfect and he wanted to protect those closest to him from his fears, his feelings. he knows now that he can open up to anyone in the family because they have the same fears, the same feelings he does. He knows I need his emotions to justify my own emotions. He said to me once, but they get to go home, how could they possibley understand? He was right the rest of my family does get to go home, so it makes it even tougher on Norm, or maybe somedays even luckier, as he gets to or has to be around me all the time. I know now that most days he feels luckier that he gets to be with me all the time. I know now that Norm gets "it" and just needs the same thing I do, to know that I still love him and need him in my life. Cancer can not change the relationship I have with him or he has with me and finally we have been able together to show that. I am so thankful for him in my life. Norm has learned to balance on the tight wire of our life. I am so happy that he finally got the courage to jump on that wire. I am so glad he is in my life, I hate putting anyone thru this, but am glad I get to have Norm by my side, Most of all, I am glad he just gets it now, I can't imagine letting this disease take away my best friend in life, before my life is done. I know that when I take my last breath, my best friend will be there. I can't imagine what I would do without him, and am glad I never have to imagine. He's my friend, my lover, my husband and I am the luckiest girl in the world for having him by my side. I'm so proud, he's mine. I can share anything with Norm and he knows he can share anything with me. We know that cancer will not beat the relationship we have. We have each other and that is enough. little did we know that our song, Nothing else matters would be so profound even in this point in our lives,

I share and dedicate the words from our song, Nothing else matters from Metallica to my husband Norm
So close no matter how far
Couldn't be much more from the heart
Forever trust in who we are
And nothing else matters
Never opened myself this way
Life is ours, we live it our way
All these words I don't just say
And nothing else matters
Trust I seek and I find in you
Every day for us something new
Open mind for a different view
And nothing else matters
Never cared for what they do
Never cared for what they know
But I know
So close no matter how far
Couldn't be much more from the heart
Forever trust in who we are
And nothing else matters
Never cared for what they do
Never cared for what they know
But I know
I Never opened myself this way
Life is ours, we live it our way
All these words I don't just say
And nothing else matters
Trust I seek and I find in you
Every day for us something new
Open mind for a different view
And nothing else matters
Never cared for what they say
Never cared for games they play
Never cared for what they do
Never cared for what they know
And I know
So close no matter how far
Couldn't be much more from the heart
Forever trust in who we are
No, nothing else matters

So I think I am special

Seems like a good title to todays blog. I seem to think I am special and deserve to be treated special. This is true alot of the time. Having cancer doesn't put a big C on my chest but it does make me realize the little things in life. Most of all I realize that I need to be needed, so I must think I am special, just because I have cancer. It is true, I need to be needed. There are so many things that I can't do anymore that used to be just common place, actually my whole world was turned around, upside down and continues to spin out of control. A lot of times, I find the things that used to be just aren't anymore, people can do things on their own without my help and people continue on down the path of normal life. I just need to feel needed, little things and big things. Sometimes it feels like I have already died because the things I used to be needed for, the things, a friend, a wife, a mother are needed for, well I don't feel needed for alot of things anymore. Sometimes I wonder if I am already dead. Don't get me wrong, I am glad to know that people will carry on when I am gone, but sometimes I just need to feel needed in this uncertain world that has changed so dramatically for me in the last almost 10 months. I just need to know that I am still important, and sometimes I take it past the point I am trying to make, or sometimes it bothers me when the things I used to just do, don't need me to do them, or to be there or to listen, or to just be. I have to realize that just because my world is spinning, the rest of the world is continuing on as usual, I have to learn to sit back and realize that Im not that special and Im not always needed. Perhaps I need to learn that I have taught others to do for themselves and that is the reason I am not needed, perhaps they just think it is a bother to ask me, and just do it their selves, but I need to be needed most of all because cancer shouldn't be able to take that away from me, not yet, not ever. and perhaps I put a big C on those around me and never realize it's not their job to make me feel needed , it never was and it isn't now. My expectations perhaps are just too huge and I need to work on that. This isn't easy and I am not perfect and even now I have lessons to learn.

My friend Jackie sent me some awesome words to live by and so for today I will use one that i need to learn most of all

Live so that when your children think of fairness, caring and integrity, they think of you. ~ by H. Jackson Brown, Jr. ~

On the medical front, I have been having pain in my stomach, I ended up in the ER saturday night. Let's just say things aren't passing through my body very fast these days and it leaves me in pain and feeling very bloated. Happily they got me fixed up. They wanted to keep me longer and give me more fluids since they see a possible blockage in my colon on the xray, but I opted to come home, I can't stand hospitals and want to spend as little time in one as possible.

Please continue to pray for healing and for peace.

On A good note

Today is a good day, I am alive. Sarah my daughter came down to visit tonite, it was fun just seeing her smiling face tonite! I have talked to all 4 of my kids today, both my sisters and hubby is caring as always, whats a gal got to complain about with all this love?
I went for blood work today and am feeling a little fevered tonite so hoping its not something I am coming down with, hate to even say it, knock on wood, but overall I have had very few complications and hope to keep it that way. I try to eat lots of protein and so far that has kept my blood counts in good shape. From what I have read this chemo likes to lower your blood counts so hoping the protein will help to rebuild everything.

I am blessed. What more can I ask for? 3 of the 5 grandkids are spending the night tomorrow so it should be lots of fun. I can't wait to hang out with them, and Norm is the best papa in the world so I am sure I will have to share the grandkids with him, or more likely he will have to share them with me. My favorite Korban story for the day. Every time I talk to Kristi my DIL on the phone Korban has to talk to me, as soon as I say Hello, he wants to know where's his Papa, I always tell him working, well ok sometimes I tell him I threw him in the garbage:), but anyways, Korban always ask why papa is working, so I have told him for months, papa is working to buy dog food for the dogs. Korban knows the routine, but he asks every time I talk to him, well lately, he answers his own questions, and asks a few of his own. He has been saying, papas working? I say yes, he says to buy dog food, I say yes, and lately he says why those dogs eat so much:)... Korban just turned 3, and as you can tell he is one in a million... poor ole papa having to work every day to buy dog food for our 3 tiny dachshunds, poor guy:P This is a picture from last weekend of papa and Korban having fun in the pool, doesn't Korban look like the little boy from the movie Big Daddy that has adam sandler in it?

Some days I am not sure where I belong

Today is one of those days. I just don't know where I truly belong. I can't even find a support group for my type of cancer. There isn't one, because my cancer is so rare. I don't even fit into a support group. Do a search for small cell neuroendocrine cancer and it points to lung cancer, well I don't have lung cancer so I don't fit in there either. Some days, it is the truth that I don't fit in anywhere. No one understands what I have or how to treat it, they know it is aggresive but their isn't even enough cases to even know what to do. I said to my local oncologist, maybe it''s not even cancer, he replied ya it's cancer. What difference does it make how hard I fight or how much I struggle if no one even knows what to do with my cancer? Some days I can get through just pretending that I am fighting and I feel ok so I must be ok... and then most days it's impossible to get thru "faking" it, I have cancer and I am dying from it and I know this, this is the only certain in my life and it sucks, just plain sucks, no plan in place, nothing just simply some days I don't understand. I have always been such a fighter and it doesn't even matter how hard I fight, it doesn't even matter. I am finding that it is easier and easier to hide my feelings from those close to me, just because I have brought them down so many times before and it's not something I want to or will do to them anymore. I hide in my own mind, not knowing where I fit in to this mess of a situation I have called cancer. All I can do is go forward, but I am not even sure why, because it makes no sense at all, none of it make any sense. Their is no problem solving here. It is what it is, and knows noone really what it is, so for today the truth is I don't know where I belong or where I fit in or if I even belong or if I even fit in. Just hoping for a miracle, a place to be and someway to fit in.

My husband said the plant always turns towards the sun, I want to be the sun so bad, what happens to the plant when the sun goes down? My life resembles nothing that it did a year ago, it has taken such a profound effect on my family, I don't even know how they get thru it, and I hate putting them through this, they dont deserve it, they are the most caring loving people in the world. I completely understand when they don't have the right words to say or the right emotion to show, because I don't know what to do either. I guess I need to pray for peace of mind again for myself and for my family, I need that more than anything.
I am so thankful for all of you that read my blog, that pray for us, and that comment, you can't believe how just a few words on a computer screen from your comments can be my inspiration for the day. Even though I am not coformtable sharing the specifics from my post last week, I want you to know that your comments have inspired me to move past that onto other things that truly matter in my life. For most of you that thought I had just truly lost my mind, I assure you the situation did almost make me lose my mind but was very real and very hurtful and I learned most of all that I am still living, and I must still have lessons to learn even at this stage of my life.
I am starting to write letters to my family so they will have them forever and it is so hard because how many peices of paper does it take to share how much I love them, how much they mean to me, how wonderful they are for being there for me, how much paper does it take to fill a life time of memories?

Hmmm reading back thru this post makes me once again leave the reader going, this woman is losing her mind. I promise I am not, this is just so hard to even imagine, much less go through and this is my outlet to let all those feelings out. Its important to be able to just let it all out sometimes, and this is where I choose to do that. Some day my family will have my blog to look back on and I hope they know how hard I fought and how much I cared about them.

Todays slogan for the day.. Life is a deadly disease, 100% of us will die one day, remember that as you go throughout your day, my death may be imminent but none of us are promised tomorrow, make today the very best you can, let those you love know it. Cherish every second.

Round 2 Over, and what a pain in the butt....

Well round 2 is done, and once again Tami shows how tough she is. We went up Thursday night, stopped in our favorite restaurant and had a nice dinner. Tami and I walked back from the restaurant, which was a good 6 -7 blocks. We stayed at the Westin on Michigan Avenue, thanks to the American Cancer Society for a decent room rate.

Friday morning we headed off to Chemo, Tami had her labs done first, and they were really good. We met with Dr Benson, I cant say enough of about him. I really think a lot of him, and that says a lot coming from me, I dont care much for doctors, specially these days. He talked more in-depth about this shot Tami would be getting. Its basically a human growth hormone, it has been shown to stop the growth of tumors like Tami has. He said he has had patients on this shot since 1992, so if it works for Tami, at the very least we could stop tumor growth completely. He did go on to say that Tami does have a more aggressive style tumor, but he was hopeful for good results, and the fact that the tumors have the receptors to accept this shot is very very hopeful. The shot is given in the backside with a very large needle, it has to be injected into the muscle if I understood correctly. The Nurse giving the shot seemed to enjoy it a little too much :)

I dont know what it is about Dr Benson, as we look back on Tami's journey his name has popped up here and there at a number of different times. The way he talks to you and communicates what he is doing is just remarkable, every other time we have a meeting with a Doctor, Tami always comes away feeling confused and lost. I have yet to see that in Tami, and thats a good sign. He makes no promises, but he also doesn't make any prognosis, its refreshing to find a doctor that doesn't consider himself so godly that he can predict the future. I think we are finally in great hands.

Even better news, after the Chemo, Tami walked out to smoke and I ran off to pick up the Chemo pills she takes home. The gift shop in the hospital had just what we have been looking for all this time. A new liver! SO I bought Tami a new liver. Ok, its a little yellow stuffed liver (kinda like a beanie baby) but it made her smile and thats my most important job these days. Its good that we can laugh and joke about this, otherwise we would be doing a lot of crying.

Tami decided she wanted to walk back to the hotel, again, showing just how tough she is. It's a nice walk along Michigan Ave back to the hotel and was just nice to be able to spend time together. I figured that would be it for the day, and that I would run out and get food and bring it back for Tami, after a couple hours nap, Tami would have nothing of it. Back out on the streets we went. We went up to the Hancock Observatory that was right across the street. Up to the 94th floor. We then walked around Chicago, stopping in at a store called Lush, the man description I will give you is a store with a bunch of stinky soap. I am sure Tami would describe it otherwise. She found herself a couple stinky items and off we went, we wandered about around the Water Tower, over to the Hersey Store and then down to Giordano's Pizza for a stuffed pizza that was simply amazing. We must have walked for a few hours and Tami kept truckin along, I am so very proud of her, she is such a fighter, more than I think she even realizes at times.

Ok, I better mention this as well. I guess some Mexican Soccer team was staying at the hotel we were at. They had police barricades up at times and there was media everywhere snapin photos and interviewing fans. All I will say is this, if Tami would have turned up missing, I probably could have found her on the 5th floor. :)

Saturday morning we hit the road, loaded up our Cheesecake from the Cheesecake Factory and head home. Tami had moments all weekend with not feeling well, but all things considered it was a good Chemo weekend, as good as they can get anyways.

I'll have a bloody mary... add the mustard gas please

I would love to have a bloody mary, but guess I will settle for a dose of chemo with mustard gas instead, well at least as long as it's killing off these cancer cells. Truth is I am scared of chemo again, just like I always am. It's like going out for a night on the town, you know were your going but not sure how the night will turn out.

I have to admit something here that has been making me not post on here. I hate mean uncaring people. You know the kick um when they are down kinda people? I have encountered one of those people and it just plain sucks. Even when cancer isn't bad enough, I got kicked hard in the heart. That is the reason I haven't posted much. I don't want that person to know anything that is going on in my head, they already know too much about me, and again I hate mean cruel heartless people that dont think I have enough going on without adding more to my emotional plate. however I am a survivor, I am a fighter and I could even be considered one mean bitch at times, so I move on and I post. Why? Because it's my right to do whatever I want to and posting whats on my mind here makes me feel better, and so guess what? I choose to post! My learning curve from this to all of you caring wonderful people is this, think about what you are doing and who you might hurt from your actions and your words. What have I learned from this? hmmmm heart aches are much worse than cancer, I am one strong woman and this coarse in heartbreak will only make me a stronger person to fight my cancer. It's not my fault I got cancer, it's not my fault I am sick and I deserve to be treated with care and respect and so comes my slogan for the day.... Even voltures wait for the animal to die before they dive in to devour it.

Please pray for this chemo to be working, and for it to be a easy as last round, pray for me to have peace, because most of all I deserve that.

Round 2 Comin up....

Well, this Friday starts round 2 of this new chemo. Dr Benson will also be adding on the octeroside shot after the positive results of the octeroscan. Tami is nervous, and I don't blame her, but she has been doing pretty good on this first round. In fact some days she might even push it too far, but that's Tami, she reminds me of my dad in the fact that she cant sit still for too long and if she sees something that needs done, she just does it. Which is the opposite of me (which I am working on changing.... slowly ).

Saturday we went out to Garage Sales with Sarah, Tami was feeling good, and she did a bunch of walking, I think she tired herself out pretty good. We also stopped by the pool place, its always funny for me to watch Tami engage in conversation with someone when she knows alot about the subject, discussing chemicals and such for the pool, the fact that the Pool guy knew her name when she walked in should have been my first clue, she is the pool queen :) ( I was reminded many times this weekend that I am just the pool boy, I offered to build her one of those lifeguard chairs so she could just overlook me while I worked).

Anyways, Thursday night we will be headed up to Chicago again, sounds like we have a really nice room this time, and for pretty cheap thru the American Cancer Society. I am sure I will be running out to PF Chang's to pick up some chinese food that night. Everyone keep Tami in their thoughts and prayers, and hope for another decent round of chemo, and for it to do its job!

Choose to be happy today. Don't worry about tomorrow. Prepare for it, but don't obsess. Just get through today's challenges.

Mike Brescia