Tuesday, December 29, 2009
Tuesday, December 1, 2009
Monday, November 23, 2009
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
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.
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.
Wednesday, October 28, 2009
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.
Monday, October 19, 2009
Here is Kevin, Pat, Sue and Dave at Central Park.
Me and Kevin.
Grand Central Station. Beautiful place.
Me and Dave on the Subway.
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.
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.
Times Square looks VERY cool at night. I don't think pictures do it justice.
Sunday, October 4, 2009
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.
Sunday, September 27, 2009
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
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.
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
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.
Sunday, August 16, 2009
We walked miles and miles every day.
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.