Death and Dying Issues

But First here are a few composits my dad made of my new nephew, Miles, my other nephew, Drew and my sister, Paige.

Baby miles.
Aunt Paige and Drew (the new big brother)

I Promised it and then Had Surgery and Forgot

Here is what I wrote about death and dying a while ago that I said I would post to the site. Yes, I still have issues with death and dying. But first, I have to give a few quick updates.

1. My port surgery site is healing up a little. I think the hole is a little smaller. It will be a while. Still hurts

2. Getting the crown fixed was immediately followed with a whole week of terrible tooth pain followed up by eventually a root canal. I basically never went off the Viccodin. The tooth is finally good and I can sleep through the night and I am all done with pain medicine.

3. I am seriously considering moving from the caringbridge website to a Google blog. Okay, I have already moved all my journal entries over there. I am still working on setting it up and getting pictures on there. I will explain the transition soon and let you know all the pros and cons. I think you will all like it better.

And now the death and dying entry. Let me first say, I usually am not thinking like this. At this point in time I was having a difficult time dealing with death. Anyway, go ahead and read.

About a month ago I heard about a woman I met at the “Young Adults” cancer support group at Gildas who died. Holy crap. I just saw her about two months ago and she seemed fine. This completely made my stomach drop like you wouldn’t believe. I got scared. Of course I felt bad for her and really felt bad for her family. She is pretty young and also had a couple of young kids (one 5 year old and one 4 year old) and a husband. I felt so bad that they were left without a mother. Then, the fear came in. The one time I talked to her she had liver mets (tumors on her liver) just like me. She had breast cancer and had hair about 1 inch long. She was about to start Xeloda while also on Herceptin so she was asking me about Xeloda (I was taking it at the time). I told her how easy Xeloda was to do and I also told her what to do to make the hand foot syndrome as minimal as possible. She then said she was Her II positive. I told her she was lucky because Herceptin has proved to be so successful. I then told her about my friend Brenda who had brain mets and was on Herceptin and how well she was doing and how she was just given an all clear from the doctors. I could tell she was happy to hear that story. My doctor was even hoping my cancer changed and became HerII positive so I could get Herceptin and have better survival odds. I told her I was going to start a group for young survivors and I wanted her to join. She seemed interested. She seemed to have such a good attitude about everything. So how come I got this email saying she had passed? How could things go wrong so quickly. Was it the liver mets? I know the liver is a really bad place to have tumors already. I didn’t need this to scare me anymore. I thought I was over the whole laundry detergent thing and this took me right back to where I was. I could possibly not see the end of the next container if things go bad quickly, which sometimes they can. How can I ever plan for anything out in the future when the next couple months could be so unknown? I keep thinking I am past the fear and past worrying about how long I have, but sometimes things like this remind me I am not completely okay with my situation no matter how hard I try.

When I did the Crazy Sexy Boot Camp with Kris Carr in Austin (May this year) we had about 13 people. Months after the boot camp I also was sent a message saying that one of the members had passed. She also seemed fine when we met and all those same feelings came up. (How could this happen so fast?) A month before she died I was trying to talk her into going on the trapeze with everyone. How could you go from contemplating the trapeze to no longer living? I guess we all expect people to look sick before they die. I know everyone measures someone’s health by how they look. Everyone always tells me I look great and people who learn I have cancer are surprised. I used to think it was because I was so healthy, but now I am second guessing that.

Then, after all this just happened, my neighbor’s friend, who had cancer, died. Kevin and I were outside and we went to tell her we were sorry to hear about her friend. We talked about it and she said “yeah, well it was all over her liver so there wasn’t really much they could do” (another big stomach drop for me) YIEKS!! I have it all over my liver!! Basically, my neighbor was saying that once the cancer is all over your liver, you’re a goner. I don’t think she remembered my current situation. I don’t blame her for saying this. Most people believe the same thing (as did I when I was re-diagnosed). As I sat there nodding and listening on the outside, I was crushed and freaking out on the inside. It was really difficult to hear. I know my neighbor would have never said such a thing if she understood how much a blow to my spirit it would have been. I completely understand that many things are said and no one can tiptoe around cancer survivors. I’m sure I have delivered a devastating blow to someone and not even noticed it. How can they know that one little phrase worded a certain way could deliver such a terrible feeling to someone trying to keep a good mental state about their situation?

All three of these events happened very close to one another while at the same time my cancer was back to growing and being active on my liver. I never really broke down or cried about it. I talked to Kevin and rationalized with myself. Then I wrote about it to hopefully get those thoughts in my computer and hopefully outside of my head. If I am going to be in all these groups for cancer I am going to have to understand that I might come across these situations. I hope in the future I can deal with this better and not let it imply any outcome for me. The future is unknown and no one can tell me what lies ahead.

Happy to be alive
Shannon

I Have a New Appreciation of what Pain Really Is

TUESDAY, SEPTEMBER 23, 2008 02:18 PM

At this point it still grosses me out when I pull the strip out. Disgusting, I know.

My port hole (aka bullet hole)
I'm getting much better at doing this.

I just wanted everyone to know that no more sympathy pains are required. No more feeling bad for me. I still hold strong that the first dressing changing was by far the most painful thing I have ever experienced (even with Vicodin). The second day I went with my dad to get the second dressing change. It was extremely painful but I would say 100 times better than the first day. So, we went from Kevin trying to hold my hand, blacking out and having to sit down while tears rolled down my face to the next time where my dad had a concerned look on his face and tears just welling up in my eyes. My dad did admit he was happy he didn’t have to be there the first day. I think everyone is kind of surprised when they see it. My surgeon told me that she does a ton of port placement and removal surgeries. Then, she said that I had the worst infection she had ever seen. My dad and I asked “ever?? Like ever in the last year???” The answer was ever, EVER. Not really a record I’m proud to hold.

The good news was that she said it looked better than she expected. When she did the surgery she thought all the skin on top of the port wouldn’t make it and would die off. Now, she thinks it looks good. The following day I took my mom to watch the dressing change. This one was 100 times better that the day before. No Tears at all. My mom made sure I took note of how nice I am to the surgeon (Dr Stein) even though I’m in so much pain. I know my mom was thinking I will flip out on her if she hurts me. It was a better appointment but now the surgeon decided that I need the dressing changed twice a day. Oh well, at least the changing is feeling better. My mom did great the first night. This morning I actually did it myself. I don’t push it down in and under quite like other people do, but maybe as the inside heals a little more I’ll get a little more daring.

One day after all this and I showered, let water in the big hole in my chest (my friend Todd said it looks like a bullet hole) and put the dressing inside the site and I did all of this with absolutely NO pain medication and did it all by myself. I got that stupid song in my head and I even started singing the part that goes…… “Allllllllllllll byyyyyyyyyyyyy myyyyselllllf” (the only words I know) Call me the toughest person you know if you like (minus singing that stupid song). I thought I was pretty cool. My new goal is to have this hole heal faster than the 6 weeks I was told.

Kevin’s birthday is today. Send him a happy birthday wish. I’ve already spoiled him to make sure he knows how much I love him and appreciate everything he does for me. Happy late birthday Uncle David (the 21st).

But now I can tell you all why I have a new appreciation for what pain is. You all thought it was my port surgery….Not even close. Yesterday my sister gave birth to my nephew Miles Eli. (8lbs 9oz) She had a completely natural birth and I was there in the room and I saw it all. I saw everything. I will NEVER AGAIN complain about my port pain. There is no way stuffing my infected port with gauze even compares to giving birth naturally. Miles is so cute, completely healthy and very content. He sleeps a lot so far and doesn’t really cry yet. I get to watch him a lot when my sister goes back to work so we will get pretty close in the future.

Okay, that’s about all for now. Hope you enjoy the pictures of the whole port process I went through (except I didn’t take any pictures when I was crying) Enjoy!

Keep it real
Shannon

Infected Port is Out and I am in PAIN

WEDNESDAY, SEPTEMBER 17, 2008 06:28 PM

Look at how red this is. For being under your skin, it should not look like this. (Forced smile before surgery)

Surgery socks, ugly gown and my 24 dvd. How I got through surgery day.

No more port
I made an appointment with a surgeon to look at my infected port yesterday. It was getting really bad. It was bright red. Puss was oozing out of it so much I had to bandage it up unless I wanted to ruin every shirt I wore this week. The skin on top of the port was peeling off (painfully) a layer a day. In a couple weeks my port would have removed itself. The pain was almost unbearable. I was loosing range of motion in my right arm. Something had to give.
So, when the surgeon took the first look at my port her expression told me everything I need to know.

Still, she told me everything I needed to know (and then some) with words. Apparently this was one of the worst port infections she had seen. There was no doubt about it that this sucker needed to come out. She asked me when I ate my last meal, and scheduled surgery for 8 hours after that. Before I knew it she had me scheduled for a 5pm operation that same day. I went home, packed some stuff (my computer and my DVD of 24) and had my dad drive me to Beaumont Hospital for a 3pm check in.

I was not that concerned with the actual surgery. There were much bigger concerns on my mind. The surgeon explained to me that when you have a really bad infection, you cannot close the incision up. If you do the infection gets trapped inside your body and it will never get better. What she ended up doing with the surgery was…opening it up, removing the port, and closing the vein it was connected to, but leaving the whole port incision completely open and stuffing it with gauze. Holy crap. They do not close me up. When you have an infection you have to leave the incision open so it can heal from the inside. They stuff gauze in there and it has to be removed two times a day and re-stuffed with new gauze. The gauze is supposed to collect all the puss, debris, and all other bad gunk that is supposed to come out. Eventually the hole you stuff with the gauze is supposed to close up (heal from inside out).

Three very bad things about this:

1. It takes 6 or more weeks to heal,

2. The scar is going to be big and look really bad

3. (The worst part) I have to change this gauze two times a day and it is going to hurt like hell.

I guess the surgery went well. She actually said it was a little better than she thought. (Thank goodness. I couldn’t take any more bad news)

Right after I was in some extreme pain. They gave me Tylenol 3 but it took a while to kick in and I was in really bad pain. Once the medicine kicked in it was all good. I was totally out of it and couldn’t walk well. I went home and Chloe and Kevin to the rescue. They took such good care of me. Chloe slept with me on the couch for a few hours. I went to bed and slept in until noon. Chloe napped with me all morning. I swear cats know when their owner is not feeling well. Kevin stayed home from work and took care of me. He’s trying to get me to eat, but I have no appetite what so ever. I have to take Vicodin for the pain. I am very anti drugs now so it kills me to have to take something but the pain is so intense I cannot stand to not take it. The Vicodin makes me dizzy, nauseous and itchy all over. I almost threw up this morning and I don’t throw up. I’ve had 30 some chemo treatments and never threw up, and I can’t tolerate pain medicine.

At 3 (very soon) I go to meet with the surgeon so she can show me how to do the first gauze changing. I am dreading this more that I dreaded the surgery. She told me it is going to hurt. I think I am taking 2 Vicodin before the appointment. I might throw up in the office, but I am so scared that this is going to hurt like crazy.

(I went to the surgeon to have the gauze removed and re-packed and now this is what I wrote after)

OOOOOUUUUUCCCCCCHHHHHH!!!! Holy hell!! My day went downhill quick. First, I am so nauseous from Vicodin that I couldn’t even take a second one for this re-packing, plus I have been feeling like I am going to throw up all day long. I had to lie down at the office because I was so dizzy and felt so sick. Then the bad part happened. She took off the tape so I could see what it looked like for the first time. At first I didn’t think it looked that bad. Then, she pulled the gauze out of the hole. OOOOUUUCCCHHH! It hurt like crazy and it was WAY deeper than I thought. Kevin had a look on his face like he has seen a ghost. I think he was surprised with how deep it was. Then, she had to stuff it back up with new gauze. This was the most painful thing I think I have ever felt in my life. It was so uncomfortable. I cried. Kevin said he blacked out for a second and had to sit down. Obviously he can’t do this in the future. He said it was a lot worse than he pictured it. We have to change this every day. Hopefully my mom can do it for me. I think it is so bad because all my skin is so red and infected that it is totally tender (plus the fact that we are stuffing gauze inside a site that is about 1 inch and a half deep.) Anyway, this completely sucks and it hurts. If anyone reading this ever has a port – get it removed right away if it becomes infected at all. Hopefully I can help someone else avoid this.

Anyway – cancer treatment is a big rollercoaster. I am on one of those really steep, fast downhills. I’m going to take a nap now. I haven’t eaten really anything in two days now and I still don’t feel like I can. Hopefully I will fall asleep and when I wake up things will be better.

Your not so happy friend
Shannon

Just Barely Got Away From Hurricane Ike

FRIDAY, SEPTEMBER 12, 2008 10:40 AM

Good thing I didn't stay in Houston one more day and walk around downtown. This is the JP Morgan Chase building downtown.

That was close..
I got out of Houston just in time. Hurricane Ike this time. My first trip MD Anderson was closed for tropical storm Eduardo, then there was hurricane Gustav (but I stayed in Michigan when I was supposed to go) and now hurricane Ike. So by the time I got to Houston, everyone was already freaking about the hurricane. I'm not sure if there was a mandatory evacuation in Houston but Galvaston had mandatory evacuation.

Yesterday (Thursday) I went to MD Anderson. I got the first blood work and they also pulled hairs out for biomarkers. I was supposed to get blood work every hour for the entire day, but plans changed because the woman who draws my blood was evacuating. They wanted me to come back a week later to make up that testing, but since it is not required, I said I'll do it. YEAH RIGHT. I said HELL NO!! Okay, no really I just said "I think I have some plans I cannot break next week." I was pretty happy to get out of getting needles every hour and there is no way I am flying out to Houston just for that. Anyway, they told me to get out of Houston right away because tons of flights were being canceled and the airport might close. MD Anderson was closing early Thursday and closing all day Friday. So, I took off for the airport to spend the day there on standby. It was tough, but I was able to get on another flight. I had to give up the direct flight on the big plane for connecting flights on the puddle jumpers. All I cared was that I got to Michigan and didn't get stranded in Houston for the weekend.

I got the CA2729 (breast cancer tumor marker) blood test results this time. It is 390 (0-35 is normal). It seems high and it did go up from last time, but I am pretty hopeful. See, last time it went up a ton in two to three weeks. It was climbing fast. If it would have continued at that rate I would be over 600 by now. It went up about 30 points in one month which is not bad. I am VERY interested to see what it is in another month as well as what the CT scans will show.
I don't have to go to Houston for one whole month. Yeah!! Hopefully that will help me get the numbers down too because I will be able to be here in Michigan making my veggie juice and doing wheatgrass daily, drinking my alkaline water, doing the sauna and all the other things I do to be super uber healthy.

Just wanted to let everyone know that I dodged the bullet and did now have to mess with Ike.
Talk to you all soon. Have a great happy and meaningful weekend

Shannon

Oh and we had another Rack Pack meeting and it was a huge success. We had 8 people this time and that is not bad for a new group. It was awesome. We decided to have longer meetings (2 hours) and we are going to meet twice a month now (2nd and 4th Tuesday of the month) I am so excited about our new group. There is a need for a young women’s group for sure and I’m glad we will be there for anyone who feels alone.

Last thing is, my port has infection around it for sure. The infection didn’t get into my blood though (that’s when it’s an emergency). I have an appointment to have a consultation to have the port removed on Wednesday. It is flaming red and it freaking hurts. Of course MD Anderson gave me medication and this time (and only this time) I am not refusing. I cannot wait to have it removed. Removing it will also help me beat this cancer. Right now my immune system is using its energy to fight this infection around my port. It also recognizes my port as a foreign object that doesn’t belong in my body so it works to get rid of it by slowly pushing it out of my body. When my immune system is tied up with that, it doesn’t put 100% effort into what I need it to do. So, getting my port removed is healthy for me too.

Now, I am seriously done writing
: )

Shannon

Shannon Update

TUESDAY, SEPTEMBER 09, 2008 02:23 PM

Kevin and I at the Michigan State vs. Eastern Game

Just an update
Hey everyone,
It’s been a while since I have written anything. I don’t have a lesson this time. I just have a Shannon update and maybe I’ll throw in a little piece I’ve written shortly after this entry to buy myself time to write a health lesson. I have a reason for not writing much lately. It is…….Zelda. Yep, good old Nintendo version of Legend of Zelda. My brother in law, Kory, loaded the game on my computer. My sister and I used to be addicted to the game and I asked Kevin if he has ever played it. He hadn’t, so I had to show him and got him completely hooked. We’ve had the game on my computer since Sunday and as of last night (less than a week later) we have defeated level 1-8 and we have all our hearts and we are on the verge of beating the last and final level 9. It’s been a group effort. Kevin has the hand reflexes so he does the actual playing (I think my reflexes are pretty slow due to Taxol and how it does nerve damage to you) I’m Kevin’s co-pilot remembering where all the treasures are and remembering how to kill certain guys. I have maps too so I can tell him where to go. Dorks huh? You would think I would have been more productive with my time home. It has been some really good bonding time and we have been really good with the teamwork. Thanks Kory

Friday, I volunteered at the Arts and Apples Festival in Rochester. I felt good about volunteering, but next time I am going to work a busier shift so I feel a little more needed. Nevertheless, I let them mark a star next to my name so the Paint Creek Center for the Arts can call me if they have other events where they would possibly need volunteers. I talked to them about making bras for the Art Bra Show when we have it and they sounded very interested.

My friend, Damian, (from Michigan but lives in Austin and works at Applied Materials) sent me his season tickets to go to the Michigan State vs. Eastern Michigan game yesterday. He got his tickets 4 rows behind our friend’s, Jessica and Joe, so we met up with them before the game and hung out. Kevin hasn’t been to State for a while and just kept repeating “I feel so old” whenever he saw a group of obnoxious drunk college kids. It was great being on that beautiful campus (on a picture perfect day) and going to the State game. College games are so much more fun to be at than pro games. I’ve never sat outside the student section and this time looking at the student section I was amazed at how cool it looked with everyone doing all the cheers together.

Kevin and I quickly checked out the Arts and Apples fair after we got back from the game. We really only got to see a little because it closed shortly after we got there. It was such a beautiful day though, it deserved to be spent outside (until we got home and beat level 7 and 8 of Zelda)

In a few days I am going to post a little blip I wrote about dealing with death. It took me a month to mentally be in the right state of mind to write about it and it took me another month to be willing to share it with all of you. It’s not anything too exciting, but it will help you all understand some of the mental challenges I try to get through so I can go on with my life in a positive manner. I’m sure anyone diagnosed with cancer can relate to what I wrote.

I feel fine being on this new drug on the trial. No side effects yet. The only issue I have right now is that my port is really sore. It hurts almost all the time now. It’s getting so bad that yesterday it hurt to have the seatbelt touching it. I’m going to talk to the oncologists about having it removed. I’ll deal with IVs if I have to. Getting those once in a while is better than having this huge, red, inflamed foreign object in my chest that I can tell, my body hates being in there. It seriously feels like my body has been slowly pushing this out. It’s very close to the top of my skin. It almost looks like a 3rd nipple (like Chandler in Friends) I literally had to photoshop it out of a picture because it looked like my nipple was peeking out of the top of my shirt it was so red. I would love to have it removed. I can have the surgery while on the study. I look forward to one last surgery and hopefully I won’t have to get any more surgeries.

One last thing. I did a little painting downstairs with the Fresh Aire paint. Holy crap. It has no chemical smell at all. Please consider using this stuff if you plan to do any painting in the future.
Okay, well tomorrow I will be flying to Houston one last time for the month. Yeah!! Anyway, this is the appointment where they will draw blood every hour while I am at MD Anderson all day long. I think I will bring my computer and the charger so I can get a lot of writing done. Maybe I’ll get another health lesson up.

Okay, Bye everyone
(Still not pregnant) Shannon : )

Made an Excuse and Stayed in Michigan

WEDNESDAY, SEPTEMBER 03, 2008 06:29 PM

Fresh Aire paint found at Home Depo. Absolutely no VOCs (those bad things that mess with your cells and make the paint smell awful) The color goes on just as good as regular paint. I love it.

Stayed in Michigan
Just wanted to send a quick note to everyone. This week I broke a crown on my tooth. (the only crown I have and the only messed up tooth I have) I cracked it when I was flossing. So, I called MD Anderson and made it sound like much more of an emergency than it was and I asked if I could get my tests done here in Michigan. They said okay but they wouldn’t pay for my ticket to be rescheduled. Kevin and I decided it was worth it to be able to stay and so I could go to the dentist. Unfortunately, my insurance only covers a crown every 5 years. In February it will have been 5 years since I got this one, but I can’t wait that long. $940 for a crown. Ouch! Expensive three days in Michigan. I better enjoy them as much as I can. I still have the pills that I take and tomorrow I go to Beaumont and they will do all the tests that MD Anderson require. It's so nice to not have to pack, fly, rent a car, go to MD Anderson, fly and unpack.

Today I was shopping at Home Depot and I saw some paint that has no VOCs. I don’t know what VOCs are, but they are the toxic substances released from paint that damage your cells. They are the reason why you should paint with all the windows open and a mask. I have heard about environmentally friendly paint that has low VOCs but this is the first time I saw paint that has NO VOCs. It is called Fresh Aire. They advertise it saying “Now you can paint with all your windows closed”, but I would still recommend opening them. They have all these funny hippy nature names like Butterfly Wing, Wave of Grain, Organic Garden, Healing Waters etc… There are a good amount of natural looking colors. They don’t have a lot of bold and bright colors. Anyway, if you need to paint I TOTALLY recommend that you buy this paint from Home Depot. It’s $36 a gallon which is a little more than other paints, but aren’t your precious cells worth it. Kevin and I were going to paint the basement soon and I was getting nervous because it’s almost impossible to circulate fresh air down there. Now I am so happy I found this paint.

Also, I get all the Pottery Barn, Crate and Barrel and Restoration Hardware catalogues and I noticed that this year they are all carrying organic cotton sheets and bedding. How cool? I know those stores are expensive, but my point is that organic bedding is getting mainstream. It won’t be long before it is in every store that carries bedding. I strongly recommend if you are going to buy new sheets that you get organic cotton. Cotton is responsible for the most pesticides sprayed of any crop grown in the country. Also, you sleep in those sheets every night. It like the salesman who is trying to sell you the really expensive mattress telling you it is worth it because you spend so much of your life there. I say organic sheets are worth it.

Lastly I wanted to go back to the first lesson I put up about all the products we use and how there are all natural substitutes that are much better for our bodies. First, I hope some of you have tried some of them and taken a liking to them. Second, I wanted to point out that these products are now all over. I see them in CVS, Wallgreens, basically anywhere there are the other products. Now you don’t have to go out of your way to get them. I think it is so wonderful how being “green” is getting so popular. I say let it be a huge popular fad. It’s one fad that will not only improve the environment but it will lessen the attack we put on our bodies on a daily basis with all the products we started using that were not naturally made. It's time we get back to nature.

Remember, Google the ingredients on the labels if you don’t believe me. You will find many of the ingredients are known carcinogens or are toxic in some way.
Okay, this got a little longer than I intended.

Bye
Shannon

Pregnancy Scare

SUNDAY, AUGUST 31, 2008 01:21 PM

I have no pictures of the pregnancy scare I went through, so instead you get my sister with her new wax lips.

I wasn’t as positive and happy at the tail end of my trip to Houston as I would have liked to be. You all usually write me and say my positive thinking is so inspiring and that I always make the best of things. Well, I am FAR from that at times. I did pretty good making the best of the Houston trip for a while, but I ran into some snags at the end of the trip. On Wednesday I went straight from the airport in Houston, to MD Anderson to have them draw my blood. It takes two hours to process, so I get this done the day before my appointment so when I go in on Thursday I don’t have to wait for my results. Usually, I get the blood test, my results are fine and then they watch me take the pills and that’s it. That is seriously what they have me fly out to Houston for every week (blood test and to witness pill taking). Well this week, I got the blood test and then went to my appointment the next day. (Here is where you will all know more about me than you need to know) They started asking me about my last period which was over a month and a half ago. I hadn’t had a period for a whole year while I was on chemotherapy because it shuts down your system. So, when I finally did have a period I was so excited because it was the first hint that my body wasn’t completely messed up from doing so much chemo. Anyway I had the one period and haven’t had another yet. This didn’t surprise me though, because I figured it takes a while for things to go back to normal. They asked me about my birth control methods and I could see where this was going. Then she said “because we have a concern about this.” I said, “A concern that I am pregnant???” And they both looked at me and said yes. They said my blood tested positive for pregnancy showing an elevated BCHG level. I’m thinking are you kidding me? If I was pregnant I would have to stop the study and that is exactly what they told me to do. They made me take a urine pregnancy test and another blood test to be sure. I had to come back in 3 hours for all the results.

This is where Paul and I had a nice lunch, but I’ll stay on track with the pregnancy story first. Paul got to listen to me obsess about how they were telling me I was most likely pregnant. After our lunch I hunted down the first CVS I could and bought the double pack of EPTs (home pregnancy test). I couldn’t wait for MD Anderson so I had to go get my own home pregnancy test to see for myself. So there I am at CVS taking the pregnancy test I just bought from them in the employee bathroom. I even waited the entire 2 minutes for the result. It was just a negative sign and there was no plus so now I was convinced that I was now not pregnant and MD Anderson was crazy.

So, finally the three hours were up and I could go back to MD Anderson so they could tell me I could stay on the study. BUT, my blood tested positive again (but this time it was lower), but my urine tested negative. What the hell???? They said the blood can sometimes show positive earlier than the urine test. It was abnormal that the hormone in the blood would be lower, but my body is a little screwy anyway it could be a possibility. MD Anderson was still convinced that I was pregnant.

I was given the choice to either stay in Houston so I could get tested again on another day or go to an OBGYN on Friday in Michigan and have them test me one again. If I didn’t get the okay from a doctor I was off the study all day Thursday, Friday, Saturday, Sunday, Monday (labor Day) and Tuesday until I tested negative). That is way too long to be off the study. They might kick me off because I would screw up their results being off the drug so long. I had to get an appointment for the next morning. I almost missed my flight out from Houston because MD Anderson kept me so long.

Kevin got me an emergency appointment for Friday morning at some OBGYN across the street from us. I filled out an hours worth of paperwork to go back and get a cup to pee in. Then, FINALLY the doctor came in. She said and I quote “I’ve been looking over your file and I’m taking it that this wasn’t expected?” WHAT?!?!?! (3 deep breaths) That is what they say to pregnant people. She said that my urine tested positive and with the blood hormone levels she was convinced that I was pregnant. I argued that the hormone decreased in the blood and that wouldn’t be the case if I was pregnant. At this point I am not taking the news very well and my mind is racing. How in the world could I hold a baby when I can barely keep my body in check? How much damage could the drugs already done to a baby? What is going to happen if I can’t be on treatment? I’m still not buying that I am pregnant so I tell her I would go get another blood test at Beaumont. I get on the phone and make an immediate appointment to get the blood tested. While doing this, the doctor leaves to go test the urine one more time. After I hang up she comes back in the room with this funny look on her face. Then, she explains to me that I don’t need to go to Beaumont anymore. She tells me that her nurse accidentally marked positive on the report when she meant to mark negative. I was in fact NOT PREGNANT. What the heck!?!? They marked positive on mistake? SERIOUSLY?? I just went through this big emotional rollercoaster in my head because your nurse accidentally marked positive? I know it is a mistake, but come on. I just needed to come back from Houston and relax and instead I am going through this crap.

Moral of the story is I am not pregnant, this doctor will not get my business (ever), and I did not blow through this day like I would have liked with my positive attitude. Yes, I have some major bad and stressful days and I get pissed, tired and cranky. It’s all over, I am back on the trial drug and not I can write about this little experience. I’m doing a lot better today.
So I’m sure we all have days like this where no matter what our intentions are, situations turn against us. Nothing can seem to go right and we are being tested like you wouldn’t believe. Things get to us so quickly we cannot seem to remember what we should do to not let things stress us out. Maybe the more you practice the easier it gets. As long as we have the mental mindset to let these days happen without crushing us to the ground, we can wake up the next day with another positive intention. Lets be honest, the probability that this day will be better than the last (when you’ve had a day like the one I did) is pretty high. Now that’s gives you something to look forward to.

Your NOT pregnant friend
Shannon

(Paul and I had a great visit. I got to shop. We watched a funny movie. The next day we went to lunch in the underground tunnels system in downtown Houston. It's so cool and very secret unless you are a business person. There are elevators in the business buildings that take you to this underground tunnel system with resturants, a food court, a mall, convenience stores, dentists, spas...everything. Now you have all learned something very cool about Houston)

Health Lesson #7 (Mind/Body)

TUESDAY, AUGUST 26, 2008 09:26 AM

Once I got these, my yoga room was complete.
Love my yoga frog.

Lesson #7
Mind/Body

Here is one thing I want to point out to everyone about mind/body/stress…..The longer you keep trying and thinking about it; the easier it seems to change. Changing the way you think almost seems impossible at first. I think the key for me was to keep revisiting it over and over. I watch The Secret about monthly. I read parts of books about the mind/body connection a lot. Kevin and I also do things to refresh our minds when it is needed. We stop each other in moments of stress or distress and make each other list 5 things we are grateful for. Now, at night, we list 5 good things about ourselves from the day.

Another thing that worked for me is to write about mind/body or write about how you feel and how you would like to feel. Another movie that is about the mind body connection (like The Secret), is called “What the Bleep do we Know”. It is bad acting like The Secret, but the message is good. You get done watching it and you want to think more positively. It’s all about the law of attraction. Like attracts like. Don’t you want to attract positive people?

Lastly, the best thing that helps you change the way you think is to have some quiet reflection time. You have to become comfortable in your own company with your own thoughts. If you are not comfortable by yourself, you probably need the quiet reflection time more than others. Anyway, my whole point to all of this is that I thought changing the way I thought was impossible, but I am experiencing the miracle first hand. I have been working at this for about a year and it is amazing how much happier and positive I am. I really didn’t need my mind working against me while I had so many physical things to work on already.


Psychoinnumerology – This is the study of how unexpressed, unfelt, unconscious feelings kept within the body eventually take their toll on the very system in which they are enclosed.
It is an established fact that emotions change the body-chemistry
The body and the mind is a single unified system.
Long term emotional depression “depresses” the immune system.
More remarkably, tears of joy actually differ chemically from the same person’s tears of sorrow.
Our ability to separate ourselves from our feelings is the uniquely-human survival-adaptation to an overwhelming world... Separating ourselves from feelings is a protective mechanism that enables us to cope with pain.
Unhealthy choices of separation can lead to illness. Our body has unlimited memory storage in its very tissue. The unfelt past is ever-present – locked in the very tissue of the body.
Just as important as what you eat is “what is eating you”
Our feelings that are in our body tissue can unleash forces of healing by normalizing hormone levels, reducing stress on various parts of the body, and providing a sense of resolution for the system.

Chinese Medicine and Mind/Body
Whenever you have one you have two. You always have an opposite. The whole idea of Chinese medicine is knowing how to balance the opposites. Dis-ease is an imbalance.
Long breath translates into long life. It is said that people who breathe longer (slower) live longer. The quality of your life is measured in the quality of your breathing.
When stress enters the body we interpret it and it moves our emotions and the shallow breathing starts. When we breathe shallow our chi (life energy as the Chinese describe it) doesn’t circulate throughout our body. When this happens it affects al of our systems (circulatory, lymphatic, immune, etc...) When our systems begin to shut down disease will start to grow in our body. Stress makes our body tighten and wherever the weakest part of your body is the stress will find a way to show itself. (The weakest part of my body was my breast because I had a genetic weakness in my breast cells.)
Posture – Good posture not only changes how people view you (when you stand with good posture you look more confident, happy and full of life) but it also improves the chi and lets your body function properly. Then, you have your mind attend to your body (simply pay attention to your body). Most people separate our bodies and minds. Basically pay attention to your body, and mentally smile at our organs and our organs will smile back.

Very Interesting Studies about Mind/Body
Are you all with me that the mind and body are connected? Do you believe that the state of our mind will in fact affect the state of our physical bodies? Here are two studies that were referenced at Hippocrates. I also read about them in books. I am not taking the time to site them since this is just my website and very informal. You can believe me or not.
One research study had a bunch of college students were injected with a substance that they were allergic to. Every Saturday they were checked and they had bumps that were an allergic reaction. They did this same thing every week for months and months. Then, one day they were injected with pure water (which no one is allergic to), but they thought they were being injected with the stuff they were allergic to. Every student had the same red bumps showing an allergic reaction to simply water.

The second study was with three groups of athletes. One group did nothing before their event (I don’t remember what the event was) One group physically trained for their event. The third group would sit for an hour every day and mentally go trough their event imagining what it will be like when they win their event. Guess what group did the best at the event. Yep, the group who mentally trained.

Last study is talked about in the movie The Secret. Athletes would get hooked up to all sorts of monitors and they would sit and imagine running a race or whatever they do. The monitors showed that the same nerve impulses in their muscles would fire while they were sitting there imagining running the race that are the same ones that fire when they physically ran the race. So I think you should all believe that the mind does in fact affect the physical body.

Interesting Tidbit
Here is an interesting little tidbit about the mind. When we are in familiar territory 20% of our rods and cones are actually working. When we do something new and are in unfamiliar territory all our rods and cones are working. So, if we expose ourselves to new experiences all the time our brain will be a lot sharper (and we will have more exciting lives) I think our impulses try to get us to do this to exercise our minds, but built up expectations make us do the usual. Ever get impulses to do something but your mind always seems to talk us out of it. You might not even notice that it happened. I try to act out every impulse I get now. I find I meet a lot more people. Rather than stand silently in a stranger’s presence I now strike up conversation. It’s a lot more fun.

Something to think about
“You are what you dream. EVERYTHING you dream is you” Do you ever wake up in the morning and wonder “Why in the world did I dream that?” Everything in our dreams comes from our subconscious. It is all part of you and what you think so the fact that you are dreaming it says something about you. After really understanding this, I realized that I am one messed up individual with a very messed up subconscious. Simply put, I’m crazy and I didn’t even know it.
All collective entities function as an integrated unit. The mind is an important element of health. This non-physical part of the self must be trained to function positively rather than wallowing in self-indulgently-destructive mental meanderings. Although we might be rigidly-obeying all of the rules on the physical level for optimum health – that effort might not be sufficient enough. An unhealthy mind can sabotage even the most scientifically-correct nutritional program. Your mind can impede on the positive results you expect to have on an improved diet. You can’t be doing all the right things but be thinking all the wrong things and still expect a positive outcome. Your thinking must be channeled into positive and beneficial directions. No more stinking thinking. By allowing negative thoughts to roam unchecked in your consciousness, you are disrupting the beneficial results from a sound health regimen. Research has shown that emotional turmoil, depression, grief, remorse, resentment, and other negative mental conditions severely restrict the regenerative capacity of your body.

The most important weapon in life is the POWER OF CHOICE. We can choose what we think about. We choose what we do with our time. We choose how we feel on a daily basis. We choose how we spend our precious time. Lets start making the choices our true mind is screaming for us to make.

I’m off to Houston tomorrow. I am choosing to not stress about traveling and instead I am excited to see my friend Paul again and maybe have another movie night at his place. I am also choosing to be excited to stop in and see my old oncologist at MD Anderson (my favorite oncologist at MD Anderson who I no longer see, and haven’t seen since June last year). I also am choosing to be excited and up for the challenge to stick to the diet while traveling. Wheatgrass shots at Jamba Juice at the Charlotte airport. : )

Lots of love to everyone
Shannon

Health Lesson #6 (Stress)

FRIDAY, AUGUST 22, 2008 05:21 PM

One good way to reduce stress is to go be around nature.
Another way to reduce stress is to hang out with cats. Look at her. No worries in the world.

Lesson #6
(From Hippocrates and books) STRESS

What a treat for all of you. My flight out of Houston was delayed and I missed my connection in Charlotte. I spent from 2:50pm to midnight in planes or in the airport and I am only in Charlotte so far. (when I wrote this. Now I am home and I have had a good nap) I got 5 hours of sleep and I am back in the airport and I fly out at 7:55 to finally go home. These past days at the airport were not miserable. Instead they were a huge opportunity for me to write two really good lessons on stress (how fitting) and the mind body connection. If I was home already I would have tons of distractions stopping me from writing so much. Time to get those self help books out and start watching some Oprah episodes. Let’s do some soul searching and look within at our true, inner selves.

This mind/body/stress lesson had to be broken into two. They are both related to each other so in a couple days (while this is still fresh, I’ll post the other stuff. Stress will be first, since I have been thinking about it so much the last couple days. It has been hard practicing what I preach. It was a good time to be focusing on this stuff so much.

First, 6 quick traveling tips from Shannon:
1. ALWAYS bring one extra outfit to wear (no matter how short the trip)
2. ALWAYS bring your cell phone charger (no matter how short the trip)
3. Try to avoid the last flight of the day because if there is a delay – you’re screwed
4. Get lots of sleep before you travel to avoid headaches
5. Keep a positive attitude and take a lot of long slow deep breaths
6. If someone conveniently got on the plane early and “accidentally” sat in your window seat, have them move so you don’t sit in the aisle the whole flight, regretting being so nice.

Stress management:
Stress is how we interpret things (situations)
Stress is a form of energy and it is up to us to identify it as good or bad.
Most of us experience stress as a negative limiting factor in our lives. We blame stress for our inability to perform. We look for a way out of stress rather than seeing it as a vital tool to help shape our lives.

Most people also complain and victimize ourselves. We blame parents, coworkers, work, and friends for what we consider our personal problems. We often deny the opportunity to resolve our challenges and blame outside circumstances therefore making ourselves victims. Every individual is solely responsible for all the stress and resulting unhappiness in their life. Stress is a state of mind and not an external factor. Once we can accept the full individual responsibility, we can become sufficiently conscious functional to accept and implement changes that we must make in our lives to reduce stress and realize our capacity to love.

Stress
Our ability to identify and manage stress is crucial to our physical and mental health. Emotional toxins that cause stress are anger, fear, guilt, shame and grief. These emotions cause stress and sometimes these emotions are caused by stress.

Stressors can come from
Physical challenges – diagnosis of an illness. The connection between stress and illness like Coronary artery disease, chronic fatigue, cancer, arthritis, and digestive problems are well documented. You can also over exert yourself and cause physical stress.
From mental or emotional sources – relationship problems, extended family relationships, job challenges, social support problems
Past traumatic events – majority of people who have undergone a traumatic event in the past still carry that stress in their body and in their tissue. Loss of a loved one, loss of a job, or divorce or break up are all past traumas that are usually hard for people to cope with and let go of.

Dealing with stress tips:
External changes - One of the best ways to deal with stress is to have the courage to change some of the things in our lives that cause us that stress. Change an unhealthy diet, change a habit, change a job or even change a partner if necessary.
Internal changes – Another way to cope is to change our reaction to stress. Here comes my driving example again. If you get stuck in traffic, look for possibilities to interpret the experience in a positive way. Now you have time to call someone you need to talk to, or you can use the time to really listen to some good music, or just take the time to relax by simply paying attention to all the sights around. Or, think that the traffic is fate and there is a larger reason as to why you should arrive to your destination later.
Prepare for the future – Try to be prepared for future events that might cause stress. Plan your future finances and give yourself at least 10 minutes buffer time for every appointment, meeting, flight etc...(also bring extra clothes, and a cell phone charger when you travel)
Exercises helpful for stress management:
Breathe – long slow diaphragmatic breathing. Get your breath moving slowly and all the way deep down to your lower abdomen. Anytime I feel some stressful feelings coming on, I stop and take three long cleansing breaths and I always feel better.
Meditation – Start with the breathing and then pay attention to your thoughts. Become aware of your thoughts and then let go. Refocus on your breath. If you like, you can repeat a phrase (your mantra) to redirect your attention when you are distracted.
Mindfulness – Learn to enjoy being in the present. “The secret to health for both mind and body is not to mourn the past, not to worry about the future, nor anticipate troubles, but to live in the present moment wisely and earnestly” (Buddha) Practice of mindfulness involves 1. Letting go of thought of how the present moment should be different 2. Focusing on the present. I have a ton of quotes from many intelligent, well respected individuals in history, but here is one from a slightly different character “LIVE IN THE NOW!!!” Garth Algar from the Wayne’s World movie.
Changing our thoughts – Reinterpret the events. Reframe events “The harder you fall the higher you bounce” Nice way to think about it huh? We are constantly faced by great opportunities that are disguised as problems.
Practice optimism – Yes, it does require practice for most people. “The pessimist sees difficulty in every opportunity, the optimist sees opportunity in every difficulty” (Winston Churchill) Start writing a “Gratitude journal” – at least 5 items every day. Keep your mind focused on good things and you will gradually become a more optomistic person.
(For item 4 and 5 I will reference the Oprah story again. One episode, she revealed a little about the corruption behind the meat industry and how meat is not really healthy for humans to eat. The meat company went after her in a huge drawn out lawsuit that she explained to be the most difficult event in her life to mentally get through next to being abused as a child. So, she found Dr Phil to be her psychiatrist through it all. Then she had him on her show and look what happened from there on out. It opened up the whole new level of the psychology/self help aspect of her show. She was on Dr Phil’s 100th episode and she said that at the time she didn’t realize it, but that whole lawsuit was the start of something much bigger. You never know what “horrible” event in your life might be just the beginning of something much much bigger and better. Try to think of things that way.
Slowing down – There is no use in running if we aren’t on the right road. Are you on the right road????
Keep life in perspective – Rule #1 don’t sweat the small stuff. Rule #2 it’s all small stuff. Always keep in mind what REALLY matters. “He who is richest is content with the least” (Socrates)
Improve your lifestyle – Get good sleep, exercise, avoid caffeine, alcohol or drugs. Take care of your physical self (mind-body, body-mind)
Improving your communication – See things from other’s point of view. Actively listen, you don’t always have to be right. Reframing allows you to listen to comments in a constructive, instead of a defensive manner.
Manage anger and frustration – Another Buddha quote “Holding on to anger is like holding on to a hot coal with the intend on throwing it at someone else; you are the one who gets burned” Another quote: “The weak can never forgive. Forgiveness is the attribute of the strong.” (Mahatma Gandhi)
Honesty - Holding in secrets, telling lies or witholding the truth all come with their own emotional baggage. These can cause their own stress. And the truth shall set you free.
LOVE LOVE LOVE
All self actualized genuine leaders share the singular trait that is charisma. The key to charisma is self-esteem and self-love. Here is a two step process that promotes enhanced self esteem:
Create a notebook into which you write exclusively about your developing self-esteem. Every evening write seven positive things you did during the day. Do it right before you sleep so good thoughts follow you into sleep. (it can be something as simple as took time to relax, or was patient with someone you usually don’t have patience for)
Every three months (or every month) set aside 30 minutes to read the collection of positive ideas that you have written.
Over time you will become what you write. You will see yourself in a more positive light and make decisions that reflect your enhanced attitude about yourself. Love replaces negativity. Abundance and sharing replace poverty and isolation. When it is dedicated to achieving greatness, the human spirit has infinite resources at its disposal. Stress is one of these resources being an important indicator of how we are maintaining our balance from day to day. If we do this then we are making stress work in our favor. Now we're talking.
Mind/body will be the next lesson soon

Lots of love and stress free living
Shannon : )
I cannot stress it enough. WATCH THE SECRET and try to apply it to your life

Back to Michigan - Have a Rack Pack Logo

WEDNESDAY, AUGUST 20, 2008 11:02 AM

My little sister, Paige and I had a ton of fun hanging out together up north.

We collected rocks and washed them.


Here is the logo for the Rack Pack. I drew a little sketch for Kevin one night and I am so happy about what it turned into.

From Texas to Up North Michigan and back to Texas

Well here I am back on a plane and going to Houston again. I will be making this trip every Wednesday for the next 4 weeks. The first two weeks I fly out on Wednesday and fly back on Thursday. The last two weeks I will be flying back on Friday. The 4th week will be the one where they draw my blood every hour on the hour for the entire day for testing purposes for the trial. I’ll have to try my hardest to be in the best mood possible that day. I‘ll let everyone know my results from tomorrow. I am hoping for something like “OH MY GOD. We have NEVER seen such amazing results and so fast either!!!” Maybe not the first week, but it could happen week two. Aim for the sky right?

I want to clarify one thing a little further about the laying into doctors thing. I never did raise my voice or yell at the doctors at MD Anderson. That will get you nowhere fast and I don’t like yelling anyway. When I “told off” the doctors it was in a speaking tone but in a firm voice. A few people have talked to me since I have posted and I think it came across that I was yelling at people at MD Anderson. Anyway, no big deal, but I just wanted everyone to understand how I deal with the doctors. If you have a firm voice, a decisive and strong opinion, and some respect you will most likely get that respect right back from the doctors.

I went up north with my dad, step mom, little sister and Kevin on my short trip back to Michigan. It was great. I relaxed, spent time outside, kayaked, paddle boated, picked out cool rocks, played with my sister a ton, played in the lake and went to the Clare County Fair and saw horses, a baby fox, all the farm animals and kangaroos. It really is nice to get away from the house and busy schedule and wake up in the morning with no clue what you are doing that day. My sister is getting quite the imagination, so we could play and make believe anything and have hours of fun where we could entertain ourselves.

While up north, my dad and I worked on a possible logo for the Rack Pack (the new support group we made at Gilda’s Club). A while ago, I had an idea and I sat down and drew it to show Kevin. I got the picture on the computer and had my dad doctor it up in Photoshop. So far I think it’s great (and completely original). I am not much of an artist, but I kind of love my drawing. I also think it is so fitting for our group and totally gets across the breast cancer support group vibe in a pretty cool way. I’d love to hear what you all think.

While on the subject of the support group, we are really excited to start things going and we’re already talking about planning the Art Bra Show fundraiser. I think we might have it next October so it can be during breast cancer awareness month. Plus, I want the show to be huge so we will need a year to plan everything. We’re going to start looking at possible places to host the event. I was thinking some of the Michigan people could chime in with suggestions as to where we could hold it.

Here are the requirements:
Needs to hold at least 300 people
We need availability in October on a Saturday
Indoors of course
We can get a good price so the money can go to Gilda’s Club and not the venue
We’re trying to get a cool “artsy” looking place if possible as opposed to just a plain banquet hall
Somewhere in the metro Detroit area would be nice. Downtown would be cool too.

Okay, we’ll keep going with the subject of the art bra show while I am all excited about it. Here are some other ways people can help. (Austin people can contact the Breast Cancer Resource Center to help out the Pink Ribbon Cowgirls with their event because my girls hold quite the awesome event, which I hope to once again attend the third annual next April) Anyway, back to the Rack Pack event in Michigan….We will need artists to donate auction items and also sell art at booths. We will need food and drink vendors who will donate catering services possibly; we will need auction items (basically anything really cool that people would want to bid on). And lastly, we will need some very creative people to make art bras. Bras turned into works of art or works of art that are made into bras. Get super creative. It is still really early, but if you have any ideas for me for any of this of know anyone who wants to get involved as a vendor or artist, let me know at iezzzi@hotmail.com.

I’m now 70 miles from Charlotte where I have a 2 ½ hour layover. They have WiFi, so this will be posted very soon. Sorry I write about the art bra show so much, but since I don’t work, I have to find other things to do to make myself feel useful.

Thank you to all the new people from Jodie’s site who have come over to look at my site and add their support. I am constantly amazed at all the people who reach out to me even though they have never met me. Every message and email I get makes me feel so good and keeps me going with fighting hard, posting my entries and writing my story. I started writing for me, but now I write for other people as well as myself. Therapy all around.
I’ll write a health lesson entry soon. I SWEAR. Sorry it has been so long. I really do have so many lessons to still post. The learning never ends. That’s all for now.

Lots of love and many relaxing moments
Shannon
P.S. The Charlotte airport has a Jamba Juice that sells wheatgrass shots. Super cool.

I Spoke Up and Got Results

THURSDAY, AUGUST 14, 2008 02:04 PM

These are the last two harvests of my garden. I am still amazed at how well my garden did. I love the grape tomato plant my aunt gave me and the cherry one my mom gave me. Even I cannot keep up with all these veggies. (except the cucumbers - I used every single one of them)

Laying into doctors works lol
Well, even though my doctor was off on vacation today she called me with my results. Guess my little rampage worked. I think I even left some of it out. I also said “you need to stop treating your patients like medical record numbers and start treating them like real people with real lives, real concerns and worries. You send us home with no results and think it’s no big deal and you don’t consider what a weekend of waiting and worrying is like for them. (calm voice)I want my results.”

Well I got the call back with all my results today.
They are not too exciting. I have a new 1.2cm spot on my liver along with the other two spots I originally had on my liver a year ago. The two original spots never went away. They shrunk in half and then stopped and that is what size they still are. There is a lymph node in my abdomen that looks like there is cancer in it which is new. The bone scan showed the same spots on my right hip and left sacrum that never went away and there is a new spot on my clavicle (right collar bone area). This was the area the technician said I had a spot on during my bone scan when they had to run extra scans.

So that’s it. That is my baseline. Lots of room to improve. Lots of low hanging fruit as Applied people would say. I’ll get the measurements and even draw little pictures for myself so I can visually see them shrink. (I seriously did that last time. Brian Scates was looking at me at work laughing when I did it last time but he was probably thinking deep down that I am crazy and I lost it)

I am so happy to be home. Chloe followed me around all day. Got to go, but I wanted to be unlike MD Anderson and give you all the results literally 10 minutes after I got them.
Oh, everyone kept asking me why they couldn’t get me my test results a week later. The answer is……Because they are MD Anderson. They are the #2 cancer hospital in the country. People come from all over the world to go there and they think their shit doesn’t stink. So, to all the cancer people out there remember… Always stick up for yourself and always make sure you get what you think is best for yourself wether it be test results, scheduling, or medication. Patient does not mean you are in the control of the doctor. Patient means you are the one paying the doctors. You are the customer and the doctors are the customer service. They work for YOU so make them work when necessary.

I am not a total bitch in the office if that is the picture I am painting. I am extremely polite but at the same time nothing gets by me and I make demands and get results.

It is the most beautiful day in Michigan. I love it back here.

Lots of love and room to improve
Shannon

Waiting For Test Results (What's New?)

WEDNESDAY, AUGUST 13, 2008 12:22 PM

Lunch with Jessica, Clint, Michele an Tim.

Fastest update EVER
I'm at the airport (connecting in Charlotte) and almost ready to board for Michigan and I'm going home. I missed Michigan, Kevin, Chloe, my garden etc..
I got all my tests in Thursday and Friday and then went to Austin. Jen, Paul and Angela and Kasey were all awesome hosts. I had a nice time in Austin and got to see some friends that I have missed. I also got to just relax, get some sun and watch a lot of the olimpics.

I went back to MD Anderson Tuesday (yesterday) to have a consultation and start the trial drug. I take two pills am and two pills pm. My blood tests were higher (not the direction they should go) and I still do not have results from the CT and Bone Scan. Oh freaking well. I layed into the trial coordinator telling her that they need to understand what it is like to be the patient and stop acting like test results are not important to rush. I'll quote myself "I am the patient. I have cancer. I have to get through an entire weekend wondering what spots in my body have tumors, I flew out to Houston, I rescheduled all my appointments, I sat through multiple blood draws and IVs, I sat through bone scans and CT scans, drank all that freaking barium. It's my body and I want to know the results to MY tests. I have every right to know exactly what is going on with my body as soon as you know" Yowzers. I'm fine now that I vented. Believe me. I'm okay with all of this and I will figure out what I need to do. I'll make it through this weekend not knowing just fine. I think I vented mostly for other patients who have to deal with that same thing. Like I said before, I am done stressing and being scared. I can wait.

I'll just keep trying until I figure out what my body needs to get healthy. I took two pills last night (of the expiramental drug) and two pills about an hour ago. So far so good.
I cannot wait to be back home by my juicer, my wheatgrass, my garden, my sauna, my yoga room, so I can start getting super healthy.

Okay, we're starting to board. I think they were delayed because this ended up not being the fastest update ever.

I still have time so I want to tell you what some stranger said to me yesterday. He said "how are you doing?" I said "Fine, how are you?" and he said "Best day of my life". The way he said it was just like he was trying to make this the best possible day for him, but I don't think he won the lottery or anything. It made me think. I need to start living like that. What if every day we tried to make the best day of our life no matter what is on the schedule. The rest of my day was a lot better after he said that to me.

Ok, got to go home.
Shannon

Done Testing - Hanging in Austin

SATURDAY, AUGUST 09, 2008 12:43 AM

Not Austin pics but a couple pictures of this BMW Drive for the Cure thing some of us Rack Pack members did. It was cool. We got to drive new BMWs from Rochester Hills to Bloomfield.
Some of the first Rack Pack members. Tracie, Stephanie, Erica, me and Alyson.

Well, I am happy with my Fantasy Football team. I was able to make it to Austin just in time to meet some friends up at the bar and draft up my winning roster. I had the last pick but it went well. I am so ready for football season now. I even have the Monday Night Football song on my cell phone ringer again.

I had chest X-ray, a total body bone scan and tons of blood drawn on Thursday. I remembered how much blood I didn't have in my body when I went running at Memorial Park with Paul and felt like passing out. I was wondering what my problem was until I remembered they drew out a lot of my blood that day. Then, I decided to walk the rest of the trail and take it easy the rest of the day.

It is great being back in Austin. Super HOT, but great. Feels like home a little. I just get so comfortable here so quickly. It really made the whole trial decision a lot easier for me because I don't have to feel out of place for such a long period of time.

I got the CT scan appointment moved up to 9:30 Friday (today) so I had to stay in Houston one more night. All in all the scans and tests went fine. I got done with the bone scan and they said they wanted to take a couple more scans of my bones. I asked why and they said they saw spots on my pelvic area (which I know about) but they also mentioned that there was another spot in my chest. It had me a little worried, but I am trying to get it out of my head until I go back on Tuesday and get the full report. I'm sick of worrying about things I cannot control. Why should I waste my energy on that? I need to focus on being super cool instead. I went to Whole Foods tonight and got some cucumbers, celery and kale to juice on Angela's juicer. My day is kind of incomplete without the juice. Cannot wait to have more energy tomorrow after I start my day with some greens.

I've been doing a little ph testing on myself lately. I will have to do an entry explaining the whole ph balance we should have in our body. Either way, my point is that when I drink the green drink(veggie juice), my ph is awesome and when I don't drink the green drink it is an uphill struggle all day long to get my ph at the optimum level. I'll do a whole entry about this because I am tracing my ph with the foods I eat and activities I do and it is amazing what I am learning. Okay, not learning, because I already know what makes your ph go up and don't, but I am confirming that what I studied was completely true.

Lots of love and no more doctors for 3 days
Keep it weird like you lived in Austin
Shannon

Starting Clinical Trial at MD Anderson

THURSDAY, AUGUST 07, 2008 04:27 PM

Houston (over by Minute Maid Park)

Best thing about Jen's place is she lives walking distance from Ikea

Jen and I went to the Aquarium the day of the big tropical Storm (Eduard). It took me a few minutes, but I got up the nerve to pet the sharks too. That's Jen's daring arm.

Clinical Trial Update
Hello everyone. Well, so far things have been a little interesting. I missed my initial flight on Monday because it took 2 hours for me to check in on USAir. Nice huh? I checked in two minutes to late. So, I went standby for both flights. I made sure I was the first standby person they talked to and made sure they understood I HAD to get to Texas that night and then I didn’t let myself out of their site until they called my name for the flight. I literally got the last seat on both of my flights to Houston. As soon as I arrived, I turned my phone on to get a message from the trial coordinator to tell me that MD Anderson would be closed Tuesday (my appointment day) because of the possible hurricane named Eduard. What?!?!? After all that trouble? The news was basically telling everyone to get ready to evacuate Houston because of this possible hurricane which only ended up being a tropical storm. It rained a lot but other than that, there was no reason MD Anderson should have been closed and all the grocery stores should be out of bottled water. Either way, Jen and I went to the Aquarium and saw a ton of really cool fish and sharks, petted stingrays and baby sharks (I was totally freaked out but did it anyway).

After I stayed at Jens I went to Paul’s house. He dropped me off at the Galleria which is the biggest mall I have ever seen. I was there for 5 hours and didn’t make it everywhere. Of course I bought some clothes (what else could I do)? We worked out at Lifetime Fitness because he had a guest pass. Man, I miss that place. At night we chilled and watched a movie.

Today I am at MD Anderson. I have been here since 10am and I signed my trial paperwork, had a physical exam, got 10 viles of blood drawn, got a chest x-ray and I got injected with nuclear fluid for my bone scan which I get in a couple hours. It will be a VERY LONG day here. I am trying to get my CT scan in today instead of tomorrow evening. Everything was scheduled for Tues, but now my schedule is all messed up. I want to drive to Austin today with Jen and not tomorrow. My main reasons are: 1. I don’t want to go to MD Anderson an extra day 2. I’m excited to go to Austin 3. My Fantasy Football draft is Friday evening and I want to be there live for it.

What is this clinical trial I’m doing????
Well it is a trail for a new drug called a Parp inhibitor. This is a targeted therapy so it is supposed to attack only the cancer cells that have the BRCA genetic mutation. It is like a chemotherapy where it can cause decreased blood counts nausea and vomiting, but I don’t expect it will be bad at all. NO, my hair WILL NOT fall out. Yeah!! This drug is given orally in a pill. I do not get any chemotherapy with it. I have to stop getting Avastin but I will continue to get Zomeda for my bones. I cannot do any kind of hormone therapy while on the trial.

How does this trail work?
Well today I signed paperwork and got blood work and scans. Next Tuesday I start the study and get blood work and the pills. I’ll probably go home after this until the following Thursday when I have to be at MD Anderson for blood work. The Thursday after that I need to be here as well for blood work. Then, the last Thursday I have to spend the whole day getting blood drawn every hour on the hour for the trial. Fun huh? Can’t wait to see what my arm will look like after that. I can go home after the long day of blood drawing and continue to take the pills. I can get my blood work weekly at Beaumont in Michigan. I will have to come out to MD Anderson monthly after that. They are going to help me pay for flights and hopefully a rental car to drive back and forth from Austin.

What is a phase I, II and III trial.
Phase I is where they are trying to figure out the appropriate dosage of a drug. One group starts the study on the lowest dose and then they keep opening up the trail to groups on higher dosages until they get so high that the participants have bad enough reactions where they have to back off the dosage. A Phase II trial they are trying to figure out what dose level is more effective. My trial is a phase II. There are two groups. The first group gets 400mg 2x a day and the second group gets 100mg 2x a day. If I progress (meaning my cancer progresses) they can move me up to the higher dose if I need to. If it gets too bad or side effects get bad I can drop the trial whenever I want. A phase III trial is testing the drug further, but now there are usually double and triple blind studies. One group will actually get the drug, one group gets a placebo, and the other group is the control group. There is no way I would do a phase III trial at MD Anderson and fly all the way out here for a sugar pill. See, now you have just been educated on clinical trials (well, as much as I know, which is limited) I do know more but don’t want to bore you so if you have other questions, please email me.

Well, I feel like this is a boring entry. If it is it’s because I am at the most boring place possible. Well, there are some puzzles I might try to put together here on the tables. I’ll try to write something more exciting next time.
Okay everyone
Bye

Oh, Kevin gave the enormous monster zucchini to our awesome neighbors who always give me great gardening tips and they made him some zucchini bread. How nice!
Also, Austin’s 7 day forecast was something like 99, 100, 101, 102, 102, 101, and 100. Glad Angela and Kasey have a pool and I brought my bathing suit.
I’m working on a lesson on stress, but I haven’t had much time to write while I have been traveling. I don’t want to stress out about getting it done on time, so it might be a little bit.
Lastly, I have gotten a TON of phone calls lately and I am in extreme danger of going over my minutes. I just had a $200 phone bill two months ago because I went over. Try to email me more than call me if you can just until this month is over. Thanks
Okay now I am really done

Peace and lots of needles
Shannon

...And Mother Nature gives Back!!

SUNDAY, AUGUST 03, 2008 04:27 PM

My monster zucchini from the garden.
My first harvest. Pretty huh?

We need something a little more upbeat after my last jornal entry. Can you believe the size of the Zucchini that grew in my garden?? I couldn't. I just noticed it today when I was watering. I have never seen them that big. Maybe there is steroids in my soil?? All I used is a little organic fertilizer one time. I also throw the pulp from my juicing in there for some all natural all good nutrients. My cucumbers are huge too. They are awesome for my juicing. I love snacking on all of the tomatoes throughout the day. All the peppers are great and my hot banana peppers are in fact very hot. Anyway, my first garden ever is a HUGE success.

Well, I decided to do the clinical trial at Md Anderson. Kevin booked my flight a few hours ago and I leave for Houston tomorrow morning. I'll stay at my friend Jen's place and also at Paul's when I am there. I'll most likely go to Austin in my down time and stay at Angela's. So, MD Anderson wanted me to stay out there for 2 months and I told them they are crazy. I will be going back and forth from Michigan to Texas a lot in the next month and then about every month for the lenght of the trial I think. I need to work out all the details and right now so much is unknown. It is so unknown that I bought a one way ticket and I am packing enough to stay there a while just in case. Angela told me it was 106 degrees today in Austin so wish me luck. It is such a beautiful time in Michigan I hate to leave. Why can't it be February right now?
Okay, well as you can imagine I have so much to do after booking a last minute flight out for medical reasons and having to pack for 2 weeks just in case.
I'll keep you all posted and let you know all the details about the trial.

Lots of love and very very ridiculiously HUGE veggies
Shannon