Tuesday, December 29, 2009

No News Does Not Always Equal Good News

Christmas Eve at my dad and stepmom's house.
Hey everyone,

I know, it has been a while since I have last blogged. A lot has happened and we have been dealing with a lot.

I went to the hospital once again. This time I had a small infected spot on my skin by my port in my arm. When there is infection by a port you always have to be EXTRA careful. So, Kevin and I went to the emergency room on Monday night (December 21st). They gave me IV antibiotics and wanted to admit me overnight. I did not want to stay and really wanted to get some sleep, so I signed out against their recommendation and went home...at 4 in the morning. The next day I had an appointment with my oncologist, who in turn wanted me to go right back to the hospital and get admitted for a couple days. I was pretty devastated because this would keep me in the hospital until Christmas Eve.

I did stay there until Christmas Eve and was finally let out in time to get to Christmas at my dad's only 1 hour late. On Christmas day I had to go to a clinic and get IV antibiotics for an hour in between Kevin's family and my mother's Christmas dinner. They had me go to the clinic daily for a week until they completely confirmed that I didn't have a blood infection.

I got some tests and results. Overall my CT scan was improved. Liver tumors shrunk, more cancer cells are dead, but there were new spots in lymph nodes. My doctor thought I got the best response from the chemo, Gemzar (the stuff that sent me to the hospital with the fluid around my lungs). We decided to add the Gemzar to the chemo I already do (Carboplatin) despite the fact that I will develop fluid around my lungs. I take steroids for 2 days and then just tolerate it the rest of the time. I do have fluid around my lungs, but as long as I can breathe and am not in major pain, we just deal with it.

When I got chemo I was anemic pretty bad (low red blood count). So, the day after I had to get another blood transfusion, this time getting two units of blood.

Honestly, this chemo is kicking my ass. No need to sugar coat it. I feel horrible all the time. I have had a headache non stop since I got chemo. I never sleep because I am still waking up drenched in sweat multiple times each night. Sleep medicine is not working. My body aches. I was really nauseous before and actually throwing up, but since I stopped taking Oxycotin for pain, that has gone away. I have no energy after getting no sleep and sweating all night. I am still really skinny. 120lbs now and that's with me eating like crazy trying to not loose any more weight.

Today I went for a checkup and found out that my platelets might be extremely low. (It could be a mistake, they are re-testing and I'm waiting to hear from Beaumont) Either way, they already have me scheduled for a transfusion of platelets for tomorrow. I'm supposed to stay basically on bed rest and to not do anything in case I happen to bump or cut myself. If I start bleeding at all tonight (like from brushing my teeth), I'd be at risk of bleeding to death and have to go to the ER. 150 - 350 is the normal range for platelets and mine came back at 11. I never had this before. My platelets have always stayed in the normal range through ALL the chemo I have ever done, so I am half expecting this to come back as a mistake. I'll let you all know.

All and all, I have just been depressed. Not like this freaking cold gray weather that has no end in sight is helping my cause. I just want one 60 degree sunny day so I can open all my windows and take a short walk outside and breathe some fresh air. Uncle David doesn't know it yet, but he is getting a call soon because I need to go somewhere sunny and warm right now before I slip into a state of depression I have never seen. Some nice 70 degree LA weather might be just what I need. I'm sure my doctor would tell me to stay home, but I realize my need for a change. All I do is sit around my house. If I leave the house, I get so darn tired I race back home to lay on the couch. I am so SICK of my house. I'm SICK of my bed. I'm SICK of the smell of freshly washed sheets. I'm SICK of watching TV, but honestly, it's all I have the energy to do.

So I don't blog forever and all I do is complain. Sorry. Kind of why I haven't blogged. I usually only like to write when I have something good to say. I'll let you all know about the platelets and think of something positive to say soon. Maybe I'll have a flight booked soon and I can blog all about the sun and fresh air breezing in from Venice Beach.

Penguin Cap update - I still have all of my hair. There is no thinning at all even with the two chemos combined. I'm thinking these things really work. I have noticed my hair has a little less life in it, but otherwise it's just awesome to have hair still. I'll keep you all posted on how the penguin caps go.

Tuesday, December 1, 2009

Penguin Caps - Hopefully Keeping My Hair

Christmas tree and lights are up. Yankee Candles smelling like mistletoe are burning and I am ready for the holidays. Chloe too. She loves sleeping under the tree. (and chewing on the branches)

Well, it's been a nice few weeks away from the hospital. It's also been a while since I had chemo. I love this every three weeks schedule. While I've been out of the hospital I have felt much better, but there's always been some issue every day. I kept having the sweats bad every night for a while. I also was loosing so much weight I was at risk of wasting away. Even my skinny jeans that I almost gave away because I never thought I would fit in them again, were big on me. I spoke to doctors about it and they basically explained to me that my body is running a marathon. The cancer is making my body work so hard, plus I have the fevers at night and sweat for 8 hours that my metabolism is going crazy. Luckily though, the sweats have slowed down. Last night I barely sweat. My weight has remained steady which is very relieving when before I was loosing at least 2 pounds a day.

I've once in a while had bad liver pain. A couple days ago I was having bad bone pain where I have tumors. Kevin and I keep telling ourselves the pain is because the chemo is fighting the tumors. I do still have fluid in my lungs. The doctor said another 2 liters, but was comfortable waiting to see if it gets any worse since I'm not in major pain and can breathe good enough. The chemo causes this fluid to build up and I guess until the chemo gets removed from your body the fluid will keep being there. I guess they just keep tapping people until the fluid stops building up. I'd like to just deal with it and wait for it to go away. I would really rather not be tapped. I'll let you know what we see.

So, what I wanted to tell you all about is the Penguin Caps I am using. These were invented by some guy in England. They are these caps with some white stuff in them, and they get frozen REALLY cold. You put them on your head 1 hour before chemo, all during chemo and 3 hours after. You keep your hair follicles frozen and it prevents the chemo from getting to them and causing your hair to fall out. A lady bought them and used them at Beaumont right around when I was first diagnosed in 2005. They worked and Dr. Margolis became a believer and got a freezer for Beaumont. They did a clinical trial and saw they were effective a lot, so now they let you use them. You have to pay for them, but if I keep my hair it's worth it.

Okay, I do not sit in the chemo chair with a penguin on my head. My dad thought it would be cute to put this stuffed animal of my sister's on my head via his photoshop skills.
You have to switch out the first three caps every 20 minutes and then the rest are every 30 minutes. When you first put them on it hurts because it's so cold. Luckily, I've always liked ice and cold things on my head. By the end I am freezing and I'm bundled up in blankets. I go through 13 caps and I'm there all day. The one thing that does suck, is when I am done with chemo, I am ready to GO, but I have to stay an extra 3 hours with caps on my head.

My dad usually goes with me. I get IV Adivan with my chemo, so I'm really sleepy and I pass out every cap we do. Usually by the time I fall asleep, it's time to change the caps. You have to have someone with you to put the caps on for you. So, you have to bring someone who is willing to stay all day. The first time we did the caps we were the first people in and the last people out of Beaumont. That was when I did Gemzar and Cisplatin. At least my new Chemo, Carboplatin is a lot quicker..

I got Gemzar twice with no caps, but that only has a 20% chance of making you loose your hair. Then I added Cisplatin to the Gemzar and we did the caps. Cisplatin is one of the chemos that is like a 95% chance of loosing your hair. Carboplatin (which I use now), I think has a high chance of making you loose my hair too (I didn't look it up). So far so good. I keep tugging on my hair, but nothing comes out. I would be so excited if this works. I know two people who used them and kept their hair through chemo that usually for sure makes people's hair fall out. My doctor seems to think they are working.

Last thing, I am having a Jewelry Party this Sunday, December 13th at my house. It will be open house style from 12 noon to 5pm. I'm selling necklaces, bracelets, earrings, bookmarks, and wine glass charms. I'll have food and drinks. My prices range from $10 to $30. I accept cash and checks. Please email me if you are interested and need my address. iezzzi@hotmail.com.

Okay, that's all the updates I have. Even though I am having some issues every day, I am still so happy to not be as bad as I was in the hospital.


Monday, November 23, 2009

The Sickest I've Ever Been

Isn't my sister Paige the sweetest girl in the world????

Well, It’s about time I let everyone know what I have been going through the past couple weeks. Well, I had the fevers for months and I was trying the enzymes as a natural therapy to my cancer. After a couple tests it confirmed that I think I was too far along with the cancer for the enzymes to work. My liver tumor sizes doubled and the activity was much more aggressive.

So, I decided to go back on chemotherapy and take a break from the enzymes. The chemo I chose was Gemzar. Funny thing is it gives you a really high fever the night you get it. Now, I’m used to fevers, but these were unbearable. I was curled up, unable to move, shaking uncontrollably all night. You know how they show people in movies after getting chemo and they are all sick and out of control??? I always see that and say “that’s not realistic” Well, now I’ve changed my mind. That was me.

The other thing Gemzar does is cause fluid around your lungs. For a while I was unable to breathe. I would be out of breath from walking 10 steps. I couldn’t do anything. I went to get my next chemo infusion and my pulse oxygen was really low. So, instead of chemo on Tuesday I went to the emergency room. They admitted me and I stayed overnight. I got a couple chest X-rays and we discovered that 60% of my right lung was collapsed from fluid buildup all around my lung. They thought it could be from cancer or from the Gemzar. Then, I had to have an awful procedure called a Thoracentesis, which is where they inject a small tube in your back and drain the fluid from my lungs. It hurt really bad and while the drained the fluid my lung started opening which causes you to have an awful coughing attack. Once I started coughing so much they had to stop. They drained 2 whole liters of fluid from my lungs. 2 freaking liters. Like a 2 liter of Coke. Did you know that 2 liters of fluid weight 4.6 pounds?

I got to finally go home to recover. Then on Thursday I went to get Chemo since I missed it on Tuesday. This time I added a new drug called Cisplatin. Cisplatin sucks. It’s really hard on your body, on your bone marrow and it makes me really nauseous. We added it because the oncologists are pretty scared of my situation and they kind of scared me into getting really aggressive with chemo since the tumors made so much progress in such a short amount of time. Plus they were still considering the fact that all that fluid in my lungs could be caused from cancer.

Friday night I woke up with debilitating pain in my right chest. I called my oncologist and of course she told me to go back to the Beaumont emergency room. AND they admitted me AGAIN. I had more chest X-rays and they showed that the fluid was back. The same amount…..in less than 2 days. This worried everyone. They were still testing the first fluid they drained to see if there were cancer cells in it. They wouldn’t let me leave. They even started talking about doing a surgery on my lungs where I would end up with drains coming out of my chest to keep draining the fluid after the surgery. I was in so much pain the whole time. They put me on Dilaudid which made me either asleep or completely loopy. I had to stay Friday, Saturday and Sunday night getting a chest X-ray each day. They started me on Steroids because they were supposed to make the fluid go away if it wasn’t from cancer and was from the chemo Gemzar.

By Monday we got the test results from the fluid and luckily there were NO cancer cells in it, so the fluid must have been caused by the chemo. On Monday I was supposed to have another thorancentesis, but when they did the ultrasound to figure out the best place to “tap” me he said I didn’t really have enough fluid to drain. So I guess that means that the steroids worked to get rid of the fluid. The other thing that happened was I got completely anemic. Your red blood count is supposed to be between 12 and 14 and mine was 8. I had to get a blood transfusion. Between needing blood and having a 60% collapsed lung it completely makes sense how I barely had energy to walk and could barely breathe.

Since I got out of the hospital things have been much better. I’ve had a lot more energy. I switched chemo drugs. I now get Carboplatin only which is supposed to be easier to deal with than Cisplatin. I haven’t really had any bad side effects. I still have trouble breathing a little.

I had a CT scan last Thursday and the results are promising. My liver tumors shrunk a little bit and I guess the cells look like they are dying. Guess the visualization is working. Please keep it up. We do. They did say that there is a significant amount of fluid around my lungs again, but they say less than I had on Monday in the hospital. The fluid can come back, so I am going to keep a close watch on myself and hopefully take care of things with steroids or another procedure before it sends me to the emergency room. That’s kind of where I’m at now.

It was a horrible time, but things have been so much better. I really appreciate every day I don’t feel horrible. I’ve lost a lot of weight and can’t seem to put it back on. I’m eating a lot too. I’m keeping an eye on that as well. I still have a lot of sweaty nights and that drives me crazy. I still have to wash the sheets all the time and I soak through about 3 t-shirts a night on the bad nights. I haven’t been taking my temperature at night, which I am going to start doing. I don’t feel like I have a fever, but for some reason I still sweat it up at night. I’ll give you all an update soon. It took me a while to write this because I had to remember everything that happened and it’s all kind of a blur to me.

Please keep up the meditation and visualization for me. I am so thankful for it and I think it is working.

Happy Thanksgiving everyone!!

I am thankful for every day I get to spend away from the Beaumont Hospital and I am SOOOOO thankful for all the support I have gotten from all my friends and family. This would be so much more difficult without all of you

Lots of love


Monday, November 2, 2009

Help with Visualization

Here are a couple pictures of a liver to help with the visualization.
This picture makes me think that the chemo dissolves the cancer cells on the liver and then sends them down the Hepatic Duct and into the intestines where the cancer cells are then excreted. There are many different and detailed ways cancer cells are removed, but I think for the sake of visualization, we should keep it as simple as possible. That works for me.

I want to provide some help for everyone with the visualization/meditation we are doing every night at 9. Kevin and I usually talk about how it went afterwards and he said he needed to know what a liver looks like, what tumor cells look like and to also understand how that cancer cells actually leave the body. Some people need lots of details to actually get a picture in their head. I know I do and so does Kevin. Luckily, I really paid attention at the Body World Exhibit when it was in Houston and I actually saw a healthy liver next to a liver with cancer all over it. So, I kind of know what it looks like. Plus I always loved anatomy in school and crazy enough, took a special interest in the liver back in the 6th grade. I thought it was an amazing hard working organ.

The liver is the largest organ inside the body. In an adult it is about the size of a football and weighs close to three pounds. It is located behind the ribs in the upper right-hand portion of the abdomen. Shaped like a triangle, the liver is dark reddish-brown and consists of two main lobes. There are 300 billion cells in the liver that are connected by a well-organised system of bile ducts and blood vessels called the biliary system.

The liver is such an important organ that we can only survive one or two days if it shuts down—if the liver fails, your body will fail too. Fortunately, the liver can function even when 75% of it is diseased or removed. This is because it has the amazing ability to create new liver tissue (i.e. it can regenerate itself) from healthy liver cells that still exist. Wonderful news for me.

When we start the visualization, we kind of welcome everyone from all over the country who are joining us. I thank them for doing it with us and express my deepest gratitude. I acknowledge that the power of all our thoughts, prayers, good vibes and good thoughts all focusing on the same end result has exponential power since we are all doing this together. Then I go into focusing on my breath and then start the visualization. We have been really good about doing this every night and I hope everyone else keeps it up. I need the help and the hope. Thank you so much for doing this with us.

I've had a lot of medical stuff going on this past week. Either Kevin or I will write a blog really soon and let you all know what is going on. I'm doing a lot better right now, so please don't worry too much.

And what would my blog be without cute kid pictures. Here are the kids in our family for Halloween.

Our nephew Miles as a puppy for Halloween. How cute?
Our nephew Drew was Tigger.
My sister, Paige was Super Woman.
Our niece Riley was a cute little white kitten.
And our niece Lauren was a pink butterfly. I love seeing them all dressed up.
Once again, thank you so much for helping Kevin and I get through this tough time by joining us at 9pm for visualization and support. It means so much to me. I really can't explain in words. I love you all for what you do for me and I have eternal gratitude for how willing you all are to help.

Love to all of you

Wednesday, October 28, 2009

How Can YOU Help ME

Feeling sick, but trying to smile for the camera.
My nephew Miles is getting so big. He's such a love bug.
Beautiful fall tree at the park by my mom's house.

I don't want to go into the health situation for too long because I have more important things to discuss on this blog. Well, I don't think the enzymes worked for me. Honestly, I think I was too far along to rely on enzymes removing the cancer from my body. All the fevers were not from the enzymes, but from tumors on my liver. They have doubled in size and now my liver is partially compromised. I guess liver tumors cause fevers and also cause a TON of pain when they get so large. I got a CT scan and PET scan. The PET scan showed that they were more active than before. I also have a lot of fluid in my abdominal area. It make sense, because I have lost a lot of weight from lack of appetite, but my stomach sticks out. My legs and arms are smaller though.

I started chemo last week. I don't feel like I had much of a choice. I love how many times I have gone back and forth between not doing chemo and then doing chemo. I'm taking Gemzar. I got another port because my veins are very small and I'll get the chemo often and Gemzar actually burns your veins as it goes in. HURTS. I got to experience that last week and man was it fun.
So, enough about that. Here's hoping to me getting better, liver tumors shrinking, fevers going away and fluid disappearing so I don't feel like my abdomen is trying to explode.

Now what can you do to help? Well, Kevin and I have started a 9pm ritual. So far for 5 nights we have meditated/visualized together. We lay down in silence with our eyes closed for 20 minutes. First we just focus on our breath until our minds are clear. Then, we start the visualization. We visualize the chemotherapy eating away at the tumor cells around my liver and then swooosh they get swept away to be taken out of my body. The other thing we visualize is the cancer cells right on the liver turning into healthy liver cells. Cancer cells are gray to me and the liver cells are red. I mostly vision the cancer cells there, but more like dead cells where the liver cells are very much alive. Every time my mind starts to wander I focus back on my breath and then get back into the visualization again.

Once again, how can you help?? Join us. You can stay in your home, but join us at 9pm and do the visualization with us. It has been proven that more minds don't just duplicate the power by the extra number of minds, but they exponentially increase the effectiveness. Please don't look at this and say, "Oh, that's nice. I'm sure someone is doing this for them." Don't assume someone else is doing it. I NEED your help and I am asking you for it. You don't have to do it every day, but please join as much as you can. You don't have to do the full 20 minutes either. If you have the time, please from 9pm to 9:20 focus your thoughts on my cells turning into healthy cells. Some people are into meditating, some visualization, some like to pray, either way, we all have the same goal and I think us doing it together will increase the effectiveness.

Here are some tips on visualization:
1. Make sure you are in a quiet area where you won't be disturbed
2. Set an alarm, so you don't have to worry if the time is up yet and you can focus
3. If your mind starts wandering, just let the thought lightly pass, focus on your breathing and start again.
4. ALWAYS have a positive attitude while doing this and try to internally smile.
5. If my picture doesn't work in your head, create your own picture of chemo, cancer cells and healthy liver cells
6. Think in the present moment. (VERY IMPORTANT). Think that at that moment all my cells are turning into healthy cells. If you keep thinking about it in the future it will always b in the future and will be less likely to happen

I don't really ask people for much. I get a lot of "please let me know if there is anything I can do" offers. Well, here I am taking them all up at once and I need them all. Please do your very best to help us with this as much as you can. I will have so much hope doing this knowing that I have so many of you out there helping me make this happen.

Thank you all so much
Lots of love and healthy liver cells

Monday, October 19, 2009

New York Trip and Health Update

First - All the pictures are available to view from Bras for a Cause. They are on the website.

Things have been interesting lately to say the least. I've had a fever for the past 11 days straight. Before I go into that, I'll tell you about the New York trip.
On Wednesday I went to fly out to New York and my flight was cancelled because of wind. They said they couldn't get me out to New York until Saturday which was no good because Kevin and I were supposed to fly back to Michigan on Sunday. (Kevin was already out there for work and was supposed to spend Wednesday - Sunday with me). I tried Thursday and Friday to get on the 7:20 flight standby, but it didn't happen. So, three mornings in a row I woke up at 3am trying to get out to New York. I had them at least make my return flight a few days later, but unfortunately I would be in New York without Kevin. I kept thinking maybe this was a sign that I was too sick to go to New York. I went anyway (finally on Saturday)
Here is Kevin, Pat, Sue and Dave at Central Park.
Me and Kevin.
Grand Central Station. Beautiful place.
Me and Dave on the Subway.

We had an action packed Saturday. We went to Central Park, Times Square, Grand Central Station. My uncle did an amazing thing and actually got Kevin and I tickets to see Saturday Night Live filmed. Those tickets are almost impossible to get. I was so excited to go. If I could pick any show to see filmed it would be SNL. We had such an incredible time. Then we walked around Rockefeller Plaza and watched people ice skate.
Here is Kevin and I outside NBC studios after the Saturday Night Live rehearsal.
This is a cool crystal thing that hangs in Rockefeller Plaza.
The next day, we went on the Staton Island Ferry, Kevin went home and I got a really bad fever and felt like complete crap. The next day I was slightly better, but not much. My friend Dave took me to the Met and we looked at art in-between my frequent breaks to sit down because my body was so exhausted. That night Dave, Pat and I went to a comedy show at the Cellar. It was so much fun. We saw Jeff Ross, Colin Quinn, and Jim Norton. Louis CK was also there, but I don't think he ever went up on stage.

Here I am rubbing the head of the bull. It's supposed to bring you wealth. Hopefully enough to cover the cost of the enzymes I am taking. : )
I went to a Broadway show caller Superior Donuts with Dave and my friend Mark and got to see the financial district. Dave and Mark were both pretty good at understanding my energy level and were always trying to find elevators and escalators as well as places for me to sit down often. That helped a lot. That way I could still see what I wanted, but not kill myself doing it or feel bad about inconveniencing them.

This is my friend Mark. We were neighbors in college and stayed friends.
Times Square looks VERY cool at night. I don't think pictures do it justice.
Since I have gotten back I have been exhausted. I have fevers every day. My bones hurt, I get winded from standing too long, my liver hurts and just about every single night I break my fever, sweat until I wake myself in a pool of wetness, but the fever doesn't go away. I have not been myself for a long long time. It's been rough to say the least, but I have a plan. I'm going to decrease the amount of enzymes I take at a time and that should help me feel a little better. Nonetheless, I have been just plain sick of feeling sick. I've had a pretty negative attitude lately. Maybe I can vent, get it out and start focusing on the positive.

So, I created a list in a effort to get it all out and move on:

Here are some things I am SO sick of:
1. I am sick of asking Kevin to get me things and do things for me
2. I am SO sick of washing my pillow cases, sheets and comforter almost daily
3. I am sick of waking up in a pool of wetness on my side of our king sized bed, moving to the center which is dry until I wake up again and now my side and the middle is wet, then kicking Kevin out of bed and sending him to the guest room to sleep and finally waking up on his side, soaked again. I go through 3 pillows and the entire area of our king sized bed every night.
4. I am so sick of not having energy to do anything
5. I am so sick of the TV, movies on demand, everything I have DVRed, and everything on all the premium channels. I hate the TV, but have no energy to do anything else.
6. I am sick of my negative state of mind. Seems like it is one thing after another lately and I am sick of the fact that I am expecting bad things to happen to me.
7. I am sick of pain. (Bone, liver and muscle pain) A couple times a day the pain makes me take a Motrin and it drives me crazy since I am trying to DETOX my body.

I cannot just make this negative list without making some effort to force myself to focus on something positive. While writing this list I decided to write something positive about every single item I listed.
1.I am so lucky to have a husband who will be my own personal slave when it is impossible for me to take care of myself. And this is not just through a 3 day cold or anything. He's been taking care of me like this for a month now.
2. My pillowcases and sheets are getting that nice broken in soft feeling you can only get after owning them for a really long time (or when your a crazy sweaty person like myself)
3. Thank god we got a king sized bed. I am lucky to have so much space to move around and find a dry spot on my bed to sleep in so I can get back to sleep quickly.
4. I got so sick of the TV that it forced me to get a new book. I got Dan Brown's latest book and it is a page turner.
5. I have been gradually getting more energy as I have been off the supplements for a couple days. I can use this time to accomplish some things and visit with people.
6. I think my negative state of mind has hit a breaking point. I now realize it's time to get serious again about changing my thought process and expect good things to happen to myself.
7. My pain is different every day, it's not like it steadily gets worse of anything. Today I could be in terrible pain and tomorrow my body could feel like nothing happened. There is always the hope of tomorrow being a better day.

I wrote all this yesterday and I already feel a tiny bit better today. Things always have the opportunity to get better.

Take care everyone. I'll take care of myself and hopefully I'll soon be writing about my next voyage away from my house. For now, I'll just enjoy saving so much gas money by staying home all the time.

Your VERY SWEATY friend

Sunday, October 4, 2009

Been in a Real Funk Lately - New Supplements

Starting off on a happy note, here are a few pictures that my dad took of the Watson family.
I think this picture is great. Roger, Edie and Lauren are so happy and Riley just started to cry. She has got to be the cutest crying baby in the world.
Here is the whole group. It was such a nice day. Keith, Kevin, me, Roger, Edie, Lauren, Kevin S., Wendy and Riley.

I have to be honest. Lately I have felt like complete crap. I'm not sure if it is due to the new supplements I am taking (hopefully that's the case) or if my body is slowly deteriorating from disease. Of course I always have my doubts.

The new supplements I am on are supposed to get rid of tumor cells and bring them out through your body meanwhile causing a lot of "toxic" symptoms. All these symptoms are supposed to be signs that it is working. You're supposed to take them for 15-20 days and then stop for 5 days to let your body detox. For 4 days straight I had a fever at night. I felt horrible. Every night I would wake up absolutely drenched in sweat. The bed would be soaked. I'd have to dry off, change and move to the other side of the bed and kick Kevin out to the other room. Along with the fever, I have aches and pains all over the body. My liver has hurt since I've started these. Sneezing, coughing, laughing breathing deep and laying on my right side all cause me pain. I feel sick to my stomach a lot. I eat way less than I used to and a lot of the time I only eat because I SHOULD and not that I WANT to. For three weeks I didn't sleep because I was taking a supplement at the wrong time of the day. That didn't help things for a while. Now, I have that on the right schedule, so sleeping is no longer and issue.

I've had a lot of bone and muscle pain. I'm weak, tired and just feel crappy all the time. I think the worst part is that I feel like I have lost my zest for life. That little spark in me you have all complimented so many times has been missing lately. I went to Chicago and didn't want to do anything except lay on the couch and watch TV. The second time I went to Chicago for more Purina media interviews I was supposed to stay longer and hang with Jessica and Joe. Instead I cut the trip completely short and went back home to my bed as soon as I could. I didn't want to admit it, but I would have stayed home for the Michigan State vs Michigan game and watched it on the couch. I am so glad we went. That was the most life I've had in me in a long time. Kevin and I were jumping up and down and screaming the whole game. Of course on the way home I slept the entire time and was pretty useless the rest of the day. Sunday I passed up tickets to the Tigers game. The possible game to put them in the playoffs. Instead I wanted to stay home. Now, I know I am still under the weather and that any normal person might have done the same thing....but not me. Normal Shannon would have gone to the game in a heartbeat.

I'm worried because on Wednesday (tomorrow) I go to New York. There are so many things (lots of them on my bucket list) that I want to do in New York. I'm worried that this funk I am in is going to make this trip no where near as great as it could be. I don't want to be wishing I could be napping while I'm in Central Park. The last couple nights I had fevers again. Woke up in a pool of sweat again. I'm on the enzymes right now, but I think I'll take a break from them while I am in New York to hopefully feel better.

I'm working on staying positive and healthy. It's hard. I'm sick of feeling sick. I know people see me with a smile on my face looking physically healthy, but inside I have been hurting lately. Here is where the positive thing kicks in. IF, this sickness I feel is due to cancer cells leaving my body....my god I will EMBRACE the pain and crappy feeling. Bring it on!! Problem is, I don't know for sure. I will try to believe that is the case and appreciate ever crappy feeling I have as it is part of my healing. I usually bounce back really quick, so maybe that is what is getting to me. This has been going on for about 4 weeks. Since the bra show. Like I said, I am sick of feeling sick.

That's all I got for now.

Oh, go to www.catchow.com/pink and upload a picture of yourself and your cat and for every photo uploaded, Purina Cat Chow will donate $1 to Susan Komen for the Cure.

Take care everyone and bare with me for a while. I miss the happy and productive me too who actually gets out, does stuff and visits people. Hopefully my old self will be back soon healthier than ever.

Lots of love and healing

Sunday, September 27, 2009

What am I doing now??? It's always changing.

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Here I am with my new treatment I am trying. 72 enzymes a day.
This is how I really feel about taking all these supplements every day at times. It gets a little old.

I left you all hanging. Before the Art Bra Show I told you how the pain that put me in the hospital was one of the tumors on my liver growing. Of course I went for CT scans, PET scans, blood work and everything was grim and gloomy. Masses were larger and my blood work went WAY up. The doc wanted me to start chemotherapy immediately. I was supposed to get a biopsy of the liver, a new port put in (this time on the other side) and I was supposed to start chemotherapy all before the art bra show. Nice huh?? I friggin HATE chemo. I can’t stand it. I’ve done WAY too much of it. If I keep at this rate I won’t die from cancer, but from too much chemo. I also was not looking forward to more surgery, biopsies etc…

So, of course I freaked out and got depressed. I was close to giving in and doing all of that in one week. Instead I started looking into more alternative things I can do. It led me to some enzymes called Solozyme and stuff called Cesium. The enzymes are pancreatic enzymes that you take in VERY large doses (like 72 a day). What they are supposed to do is break down the protective barrier on tumors and then digest up tumor masses and flush them through your bloodstream to get eliminated from your body. A doctor cured himself from pancreatic cancer with these and has cured many more once he started making these available to everyone. The Cesium alkalizes your body and is supposed to starve the cancer cells to death. That’s as medical I am getting in the blog, but I at least wanted to explain a little how I believe these could help me.

The thing with the enzymes is that as they digest up the tumor cells and they enter your bloodstream you feel like shit. Same thing with the Cesium. Tumor cells are filled with toxins, so a HUGE part of this protocol is detoxing daily with the coffee enemas. Since I already did this, it was easy for me. However, even with the coffee enema you still have a lot of toxins in your body. Let’s see, you feel achy, feverish, nauseous, irratible, tired etc etc… All these symptoms are supposed to be signs that it is working and removing cancer cells. I can honestly say that since I have been taking these, I have lost weight because I feel nauseous a lot, I have goosebumps on my arms regularly and I’m always cold, I am SO achy and I am tired all the time. I think about taking naps a lot and I am NOT a nap person. I’ll deal with this feeling all the time if it means I am ridding myself of tumor cells though.

Why is chemo not the cure??? Well, I talked to multiple oncologists about my situation and I got a certain vibe. The vibe was that I was not expected to live long even with the chemo. If that is the case, screw the chemo. Chemo is not a cure anyways. Maybe I can try something natural that actually has been a cure to so many.

Anyway, no friggin chemo for me. That’s the plan for now. Like I have said before, I will keep trying and trying until I find the magic combination that will make me completely healthy and cancer free.

Anyway, we all have our opinions. I respect everyone’s opinion, but only I get to decide what I do and no one else. It’s my life and my body so that means I am the head honcho. I call all the shots.

I’ll keep you all posted on how things go, but we have to give it time. Glasses up and let’s toast to health. AND to the LIONS!! Holy crap!! They won finally!!! Can you believe it!

Monday, September 21, 2009

Bras for a Cause - BIG SUCCESS

The First Annual Bras for a Cause Show Was a Complete Success.
Myself, Michael Radner, and Sarah Angelini.

We had Shutterbooth there. Here I am with my sister and brother in law right before I had to do my speech.
See in my hands is my speech rolled up.
I love this booth. It's so fun.
Think we'll have a photo booth next year too.

It’s funny when I think back to the day I walked into the executive director of Gilda’s Club’s office and introduced myself as a new member. I first mentioned that I would like to start a group for young women with breast cancer. Then I started to tell him about a fundraiser I would like to plan for them that I think would raise a lot of money. I knew at the time I was the only one who could see it the way I did. The amazing thing is, when I was up there on stage the night of Bras for a Cause, I realized the night was everything I had imagined in my head. And I'm a big dreamer too.

I remember saying confidently that I could sell 300 tickets to this show. We ended up selling 530 tickets. I also remember saying with confidence that I could raise $25,000 with this fundraiser. Once I started crunching numbers in my head I realized 25,000 was too easy of a target for me, so I doubled it. It’s after the show and I have crunched the numbers and we have raised $50,000. How amazing is that????? I need to have this kind of determination with being healthy, because I think a determined mind can accomplish anything.

I am so proud of myself, the committee, the models, my family and friends. It’s amazing planning fundraisers, because you meet so many people who are good deed doers. I met so many generous people willing to help. We had incredible programs, auction items, amazing art bras, models, vendors and great food. Everything was wonderful.

I was running around like crazy and hiding back stage with my uncle trying to get the nerve up to go on stage and thank everyone. I was so nervous going on stage that it started to interfere with my enjoyment of the night. My fingers went numb before I walked out there and I thought I was going to throw up. When I went out there I held my uncle in a hug and asked him to stay up there with me. That helped. Once I started talking everything was fine though and I was able to thank everyone appropriately. Then, afterwards I was able to take a deep breath out and enjoy the night.

Everyone said I didn't seem nervous on stage. I was actually fine once I was out there. Think the torture was getting ready to go out there and the anticipation.

Kevin bringing back our live auction art bras. "Bee Cups" and "Living Life to the Fullest"

We learned a lot this first year, but for a first year event I don’t think we could have done better. Our biggest shortcoming was that we sold way more tickets than expected and we didn’t have quite enough food for everyone. Please feel free to post as many comments as you would like on the blog and we'll take them all into consideration. Tell us what you liked and what we can improve on.

Here are some of the best compliments we got

“No first year event goes that smooth.” Manager of Royal Oak Music Theatre

“You know it’s a good event when the crazy people start buying tickets” Royal Oak Music Theatre’s box office

Other’s told me they haven’t felt that good in a long time and were truly inspired. That makes me feel so good, that we not only raised a ton of money, but we held an inspirational event.

Nancy Armstrong, myself and Alyson Thrift (3 Rack Pack and committee members) getting everything ready for the show at Royal Oak Music Theatre.

The marquee the day of the show.

The most important thing to me was that the models enjoyed themselves. They loved it. They loved being models and they loved the event and meeting each other. That was probably one of the most important things to me was that survivors enjoyed this event and it made them feel good. That’s what it’s all about for me. We deserve that day where we can just feel good about being a survivor and enjoy it with everyone.

Very soon I will be getting all the professional pictures my dad took of the night. Once I get those, I will post a photo album with all the pictures on the website.

Lastly, if you were a volunteer and have the pink lanyard we gave you, we are trying to collect them all back. Please contact me and we'll figure out a way to get them back.

Thank you everyone for your involvement in Bras for a Cause and for your support. I am truly so proud of all of us.

Lots of love


Thursday, September 3, 2009

Uh oh. We know what the pain was.

Well, I think we figured out what cause the pain that sent me to the emergency room in London. It was what I feared...progress in terms of the tumor on my liver. That one stupid tumor that was not responding to hormone therapy while the rest of them were keeping still or even shrinking. The liver tumor is growing. The ultrasound confirmed. Where it is growing there are a bunch of nerves, so something could have aggravated it and caused the pain. The pain has also come back. Not to the point where it hurts as bad as in London, but it hurts. I really don't care about the actual physical pain. I'd deal with the pain for the rest of my life if I could trade in what the pain meant. That's what's screwing with my mind.

My blood tumor markers are also going crazy which completes all the clues we are looking for to determine that my cancer is no longer idly sitting in my body, but starting to grow again. They went from 440 to about 880. Scary.

Of course I freaked out. Kevin was at the airport getting ready for a nice boys trip to Vegas with some Austin friends and I called him hysterical. Remind anyone of anything???? If you've read my blog back in the day you'll remember when I was re diagnosed, Kevin was on his way to the airport for a Vegas bachelor party and I called him to tell him the cancer spread all over my body and that they said I wouldn't live more than two years. Of course he skipped his trip and I forever felt guilty because he missed his Vegas bachelor party. So, this time I got my shit together and told him to GO and have fun. I should have just told him when he got back, but I can't help it, he's my emotional dumping ground and he plays the part well. He's always been there for me and I know he will always have my back no matter what. He keeps me sane for the rest of the world.

I feel for Kevin. This affects him almost as much as it affects me. I get so caught up in my own fear and sadness that I have no room left to feel sorry for him or worry about how he is feeling. Then, I get all the sympathy from everyone and Kevin I think comes up shorthanded. I can't imagine what this is like for him. I know he wants to make things better for me, but what can he do??? That has to be difficult to deal with.

Medically, what the hell am I going to do?????? Well, I am considering getting the ovaries out which is more effective hormone therapy than what I am currently doing. I manage no hormones pretty well, so I think it should be a pretty doable adjustment. However, now that things are looking a little worse, I have more to consider. I got a CT scan today and I get a PET scan tomorrow. What we're looking to see is if disease in other spots are progressing or just this one liver met. If it's just the one, we might consider RFA (ablation - sort of a surgery to remove the one non-hormone therapy tumor) If there are more spots then I think my doc is going to start speaking the dreaded word chemotherapy. I'm getting a little ahead of myself. We have two major tests to consider, but I've been down this road a few times and kind of know the plan. I pretty much know what my oncologist is going to say and suggest before we make an actual decision. We plan multiple courses of action for each possible way things turn out during every appointment, so we have a plan ahead of time. I'm just very resistant to the chemotherapy plan she always suggests.

Anyway, not a good day for me. I also have to stop getting tests done at Troy Beaumont. It's so close and convenient, but also the hospital my grandpa Joe died in. Every time I walk down that long hallway I remember the countless times I walked down there just hoping for a miracle. I walk past area D where I went up to his intensive care floor and I get immediately choked up. I remember my family hanging out in the lobby with my little sister trying to keep her occupied so she stops asking to see Pupa because it would be much too traumatic for a 4 year old. Honestly, I decided I will start making the drive out to Royal Oak for all appointments so I stop remembering that time. Guess it didn't help having that memory followed by the phone call to tell me my tumor marker results. It set me over.

Wow is this a depressing blog. Sorry. A girl's got to vent and Kevin's on his way to Vegas.
Here's the deal. I get bad news and I'm very traumatized and sad for one day. Usually by the next day I've gotten my head together and I can move on. That's usually when I write in the journal. So, today, you get traumatized, sad, scared Shannon rather than, day after already thinking positive Shannon.

It's a beautiful day and I'm going to do some gardening. Maybe that will take my mind off things. Or, I could just let Chloe keep sleeping on me and take a nap myself.

On a completely opposite note to try to end this happily...........
The Bras for a Cause show is coming along great. It's a welcomed distraction. Saturday September 12th. Come and see what we've worked so hard on for a year. I'll even get up on stage for 5 minutes to talk since I'm the president. I'd love for all you readers and supporters to come.

Check out some of these pictures we took of the planning committee for the program. They got funnier as we kept trying to get a good one. These are some of the people that are making this show happen. (as well as my uncle, my mom, my grandma...my family and a lot more people as well)
This is your Bras for a Cause Planning Committee.

Then we broke into the art bra selection and all picked one to wear.
Kevin cracks me up. Never worried about his masculinity.
See, there's always something to smile about.
I promise I'll tell you all about the socialized health care in London and my experience in a blog soon. Might be after the bra show. And of course I'll tell you what the CT and PET scan says as well as what route we go to get me back to healthy. You all know I'm a trooper, so please don't worry too much. Things will be turning for the better in no time.

Your determined to be positive friend

Sunday, August 16, 2009

I Went to the Emergency Room in London

I'm back from a long 11 day vacation in London and Ireland. We did so much and saw so much, I couldn't possibly cover it all in here. So, I am not writing about the trip part at all (in this blog entry, more to come). Instead I am going to tell you about my experience in the ER in London.

Yes, I went to the ER in London. It all started the second day of our trip. Yep, right as this picture was being taken, I was realizing that I needed to go to the emergency room I was in so much pain.
Here is me after our 24 hour stay in the ER. I'm totally high on pain pills and I look spent, which I was. Want the story........????? Read on.
We were in the British Museum looking at some old Greek statues and Egyptian tombs and drawings when all of a sudden I got the sharpest stabbing pain right under my lower ribcage on the right side. Kevin noticed and I tried to shake it off. It happened about 4 more times but went away. Then we went to a lunch and it started hurting again, but this time the pain wouldn't let up. It was constant. I was in so much pain I could barely focus. Standing, sitting, walking, it didn't matter I was in pain. After trying to cover it up for a while from the other couples hoping not to rain any of the fun we were having I had to give in and go back to the hotel with Kevin.

Frantically we tried to figure out what to do. I could barely walk, the pain had me in such agony (and I have a high tolerance to pain). How do you go to the hospital in another country? How does insurance work???? How much will this cost us??? It was bad. If I was giving in and going to the hospital in another country it was bad.

Luckily in London they have socialized health care. It's free. All you have to do is write your name and address. No ID, no insurance card, copays, deductibles and pages and pages of stupid forms to fill out with the same info on each page.

We were seen within an hour. They drew blood and said it looked fine. That helped us rule out appendicitis since there would be signs of infection. The liver is located exactly where the pain was so I was very worried about something being wrong with my liver especially after the last scan showed increased tumor activity there. My liver enzymes were just fine though. The doctor told me I must have pulled a muscle working out in the morning. I had to stop myself from jumping across the table and slapping him on the face for suggesting such a thing. Still, he sent me back to the hotel with some heavy pain meds and told me to wait it out.

Then, we got an email from one of my oncologists suggesting that it could be a blood clot in the lungs. We did some research and realized if that were the case I could easily die from it if we didn't do something. We also looked at the fact that I was such a high risk person to get a clot. Being diagnosed with cancer, the hormone therapy I am on, the fact that I was on a 10 hour flight, and I also have a genetic condition that makes me more prone to clot. .....and off we rushed back to the hospital.

This time they took us very seriously and I think agreed that it could very well be a blood clot. Unfortunately the only way they could really tell was by getting a CT scan which couldn't be done until the next day. They wouldn't let me leave since it could be a clot and that was so dangerous. So we got to sit in the emergency room from 1am till 3am in the morning after a Saturday night while all the drunk people from the bars came in puking their guts out from drinking too much, getting their stomachs pumped, and there was a guy with his face bashed in from a bar fight crying. Honestly, Kevin and I listened to people puke all night.

Finally they transferred me to the overnight unit where there were more people puking. We barely slept. They would wake me up every 45 minuted to check vitals just as I was starting to fall asleep. I got a blood thinner shot just in case and they barely woke me up to give it to me. WTF?? It totally freaked me out. Then I woke up to about 7 doctors surrounding my bed. They talked about what was going on and my upcoming CT scan. I finally had it done by 11am and then we sat and sat and sat. It was a beautiful day outside and I was REALLY starting to feel guilty. Here Kevin works his ass off all year to get this trip and then of course I have to make it all about me and get sent to the emergency room, so we can't even enjoy our time in London. The rest of the crew we were with were watching the changing of the guards and touring Buckingham palace. Kevin never made me feel bad. I just did it to myself.

Finally someone came in except they told me the doctor who was going to read my CT scan wouldn't be in until 5pm. And then I started to cry telling them I just wanted to leave and I wanted to be on vacation. The tears worked. Within 30 minuted another doctor told me he didn't see a clot and I was free to leave without worrying about dropping dead any minute. We still were clueless, but have finally ruled out everything life threatening.

We went back one more time before we left for Ireland to get my blood work done because the pain had not stopped the last 4 days in London. I basically just walked around with my head in a cloud on those Codeine pills they gave me. It was quite the experience as well, but that's for another blog. Anyway, we were checking my liver function to see if anything changed (well to see if it is still working). It checked out fine. The doctor that night thought it was possibly an ovarian cyst that burst. The pain is much higher than where my ovary is, but I guess the pain can radiate up really high. He wanted me to stay and get an ultrasound, but it was too late and we had to fly out to Ireland.

Don't worry, the ER didn't ruin the trip and neither did the pain. I'm a tough girl, so I dealt with it the entire time and was still able to focus on all the awesome times in London.

Afterwards we went to the London Eye.
I saw the Tower Bridge which was my absolute favorite. The actual London Bridge is just a plain concrete bridge. Funny huh??
We walked miles and miles every day.
Half of our time was spent navigating the tubes or the "underground". Thank god we had navigator Kevin who had lived in London for 4 months during college. These are the other couples that were with us. Matt and Carrie Koster and Nick and Kelly Miotke.
Rick Kidd joined us a couple days in. Here we are making the long hike to the top of St. Paul's Cathedral. It was soooooo cool.
On the tube again. The happy group. This was before the ER.
This is me and Kevin on the London Eye. It was cool. Rather than a seat, we were in this big bubble room that fit 20 people to go around. You could see everything from here.
The group on the eye of London wheel.
I'll write a blog about London, one about Dublin and the I will write one comparing the differences between the socialized medical system they had in London to our system here in the states. It was an interesting experience.

I've since had a ultrasound back here at Beaumont in Michigan. Nothing showed up, but it it was an ovarian cyst that burst it probably would have been absorbed before I had this test anyway. We might never know what caused it and that will drive me crazy. Where is Dr. House when you need him. I was all messed up on the pills in the hospital telling them that I bet he could figure out what was wrong with me. This was by hour 22 in the hospital.

The pain is much better now and I barely notice it.

Anyway, that's my ER in London story. Never a dull moment.

Peace and love and pills

darker pink dots