DiagnosingLove

Quick Update

2009-10-25T10:20:00.000-07:00

The last few weeks have been much much better!
It's been great working and painting in the studio again, spending time with bf and family! Even helped Shawn with repairing his roof, and was able to make it to an Alabama football game at a friend's house!!

Lately I've really been trying to focus on setting some future realistic goals. Some are a little out of reach, but I don't care.

With disability money coming in soon, I should be able to afford rent payments for an apartment. Will be looking for a place that has a seperate room for grooming salon. That way I can set my grooming supplies up and make money to afford living there...Also, keep painting, and hopefully sign up for a class or two this spring :) It should all come together soon! I can't wait! With treatments going as well as they are, and my body feeling as good as it does, I have to make plans for my life!!!

This Halloween should be fun, looking forward to working in the studio helping Beck with her painting class. She's dressing up as Bob Ross, and I will be her Eizel...haha

On a down note,

My grandma has been diagnosed with lung cancer, and still smoking, so there's a lot of emotion and learning coming from this...Lots of mixed feelings. Her treatments are going well though, and she seems to be doing great with them, Praise God! It's funny, we have the same cancer doctor and even had treatment the same day once..haha

That's about all there is to talk about, not much to say when there's not much to complain about..haha Praise God Again!

Until next time,
Keep Living :)

What I've learned from ChemoAndCancer

2009-10-06T16:00:00.000-07:00

There's no better time then the time that is now.
No reason to be afraid of something you can't change.
There are sooo many helping hands along the way.
Family and Friends mean more then anything.
God is in Control.
Patience, there's not much time to learn it, you just have to do it.
A woman's crafty heart can warm my cold head in the coldest of winter. Happy Hats :)
It's easy to find yourself when there's nothing else standing in the way.
Amazing how something So Common can make you feel So Alone.
You can survive without money and material things, but you can't live without Love.
When you feel like giving up on yourself, look at you those who love you.
Cancer just Sucks. That's should be number one.
When you feel as if you've lost your purpose, you find it.
There is life beyond cancer.
Organic foods is the way to go.
Who needs hair anyway?...and who needs make up, really?
A smile lasts a million miles and goes even further when shared.
Kids are so innocent. They are God's gifts for us to cherish.
You find more friends then you thought you had from before.
Physical looks don't matter to those whom matter to me most.
Everybody can make a difference, in some way, big or small.

FunEvent4TheDay

2009-10-04T16:18:00.000-07:00

So my sister is getting married this Feburary in Destin Fla. We sat down to go over the decorations and venu at the hotel. It didn't take long for everything to be sorted out and discussed. All tara has to do is make a few phone calls to save some leg work and we're closed to finishing plans. yay!! We are all super excited about the wedding, and I hope to be finished with chemo and have some new hair to show off!!

After finishing our wedding discussion, mom pulls out a form for me to sign. It's a Living Will. I couldnt help but laugh! Here we are now going over my younger sister's wedding plans, and I get the joyment of filling out my living will. :) yay Deanna. It didn't faze mom how it made me feel. To her, it's just one more thing I need to have done for the doctors. My Fun Event for The Day.
Living Will signed, atleast I did something productive today ;)

First week of milder chemos :)

2009-10-03T15:41:00.000-07:00

Monday was the Avastin insfusion, and it went well. The treatment only lasted 30minutes compared to the 9 hrs that I am used to!! The only downer was that it took 4 sticks to get the IV in my arm since the doctor ordered my pickline taken out last week!!

Tuesday was the Tarceva pill, the only side effects from it is really bad acne. yay :)

Wednesday was the Abraxanne infusion, which it was only a 45min treatment...a breeze...
Thursday, we traveled to Vanderbilit, you can read about that above...
Friday was spent relaxing and fretting. Mom has been so worried about all the pain meds the doctor perscribed that shes afraid to give me the wrong pill. The pain patch has worked fine, except it causes me to itch all over, and a little bit of dizziness. So, mom calls the Dr. and he wants to take a look at me anyway, just to see how I am doing with the new chemos. We get there, and I am soo doped up that I really couldnt help but laugh the whole time. It was funny. He hugged me and we left the office. Mom went into the pharmacy before we left CCI to grab Mirilax. I really had to pee, so I told Hannah to wait for me outside the restroom in case mom came back. I used the restroom, not thinking of anything, and walked out. Took a look at Hannah, and she was laughing at me. Turns out, I walked into the Men's restroom. Now, seeing the urinels made since..lol

Shawn texted me, said his truck broke down on the way to the cabin. I called him, but he was in the middle of fixing it. Turns out the brakes bleed, and so they were headed to cabin anyway, and that he's cell whouldn't have much reception. No, I'm not worried. Haven't heard from him since.

Since last week, my grandma Kennedy has been in the hospital undergoing some tests. She has had some problems lately and we have been waiting to understand why. After having a petscan, we learned that she has a cancer tumor inside of her lung. It is has not spread and should be easy to treat. She will start treatment this Tuesday after meeting with the same cancer dr. Dr. Schreeder, my doctor. Sounds like she will be on the cystplatnin and vp16, two of the three treatments I was on before my last petscan. My thoughts and prayers are with her, and also, praying for my mom because this has been alot for her to handle lately. First me, now her mom, and she's still trying to hold down a full time job...Please God, hold Mom up and help her through this tough time!

On a better note, my little sister Tara and her fiance Jared are home for the weekend watching football and playing guitar hero. It's been relaxing, tonight we're grilling some organic chicken and corn on the cob. Well, Dean is still learning to grill corn, so it's going in the oven, but it will taste good no matter what. He's really working hard to help fill in while mom is away. He's doing laundry, cooking, etc, you name it..:):) He's a wonderful step dad to have.

Right now, I am waiting to change sheets over to dryer. Ever since chemo started, I have regular night sweats, and usually drench my sheets every night. It sucks. Usually I wake up freezing cold from the dried sweat on my bald head, and then having to peel the clothes off my sticky body.

5 Things To Live For

2009-10-01T20:04:00.000-07:00

Live to Love God, Family, Friends and Myself.
Live to Share My Story with others.
Live to Help those who need my help.
Live for Those who have Lost the Battle.
Live to Paint my way down the tunnel and brighten up the dark.

There's definetly more then 5 reasons for me to live, but just as an example. What are 5 reasons for you to live??

Dr. Pusanov's Recommendation

2009-10-01T19:47:00.000-07:00

Okay, so I am back from Vanderbilt Tennessee, and learned some good things. Since the experimental drugs won't be available to me until they have tested my tumor slides, Dr. Pusanov has agreed with my Dr. Schreeder to continue my third chemo cocktail of Avastin, Abraxanne(once a week, 1/2hr treatments), and Tarceva(once a day oral dosage). These chemos should hold my cancer in place until researchers find out more about my tumor. With that said, I feel confident and reassured that I am in the right hands for sure. It's always nice knowing there's more then one brain invloved in a cancer dilemma... :)
Another positive note, these three chemos aren't hitting me near as bad as the Cystplatnin and the IFOS. I am able to still walk around, watch television, talk regularly, smile and laugh. Even the vomitting has been minimal, so this is very very good to give my body a break until experimental treatments start up.
The Fentanyl pain patch has seemed to work very well for my body pain compared to the oxycodon and luratabs. Although, I have experienced minor forms of dillusion at times when I am most tired. Last night I woke my mom up because I was knocking on my head board as if it were the door. My boyfriend was talking to me on the phone the night before and said I interupted him to tell him his dad was walking into my room to bring me a glass of chocolate milk. Weird, isn't it.
Anyway, I am really tired tonight, and to beat the dillusions, I should go to bed soon.

Shawn is home in Pennsylvania for the next few days spending time with his dad and brother, so I should have plenty of time to post more info along with some pictures.

TMI, it feels really good to let out some gas after being stopped up for days!!! LOL

Headed to Vanderbilt Tennessee

2009-10-01T06:15:00.000-07:00

Yep today is the day that I meet with Doctors in Vanderbilt. They all ready have samples of my tumor and are testing it with experimental chemos now. The past few days have been an emotional rollercoaster. Last weekend I was finally able to meet my friends for breakfast at cracker barrel which was nice. But later that night the bone and lymphnode pain started up again. I was hoping to take my little sister Hannah to the Big Spring Jam (downtown concert festival) and spend well earned, quality time together. But I couldn't and it was reallly depressing. My hips were hurting from the bone pain caused by chemo, and my internal organs were hurting due to swollen lymphnodes. After my my handful of tears, Shawn met with my mom for me to go to home with her and be with my sisters through the night. (sorry if none of this makes any since, i've been dillusional from the mix of pain pills and chemos lately) I had a big surprise waiting for me after waking up at my mom's house the next morning. Not only had my sister Tara from Tennessee come down to visit me, but mom's whole side of the family came over too! It was great seeing everybody becuase it was a chance for all of us to reconnect again as a family. As one. My grandparents brought over home made meals, pawpaw took pictures with his new Alabama colored camera, and mawmaw gave me one of her diamond rings to wear. After our meal, my uncle Mike gave us his testimony about his walk through life, and then read versus from the bible to the family. It was a touching experience. Mom also shared her story about how she was given "healing water from the Lourdes" and about the Miraculous Medallion I wear around my neck. I also threw a couple words in for everybody to understand what I'm going through. "No matter how bad things get in life, and how hard it seems to live, you can't give up. Everyday is a battle, and each battle you have to fight to win." These words were said to me by Shawn one night and they stick with me now. So really, they're his words ;)

After experiencing so much pain over the weekend, and having visual signs of the tumors growing, Dr. Schreeder wanted me to start treatment to hold me over until Vanderbilt could put me on a chemo schedule. So Monday I started the Evastin (1 of 3 chemos I took the first 6mos)treatment which only took 30 mins. Except it took 4 shots to stick me with an IV since my pickline had been removed. My veins were too small to hit because I had just thrown up before they started with the needles. Anyway, after transfusion was over, all I could say to Christy was "is that it!?!?" because usually I am there for 8 or 9 more hours!! Schreeder also has given perscriptions for pain. So now I have a little bit of everything. Hydrocodone, luratabs, merinol, fentanyl patches, along with tylenol, ibuprophen and advil when needed. The luratabs hit me hard and I gett really loopy, but it doesn't hold back my pain b/c before too long, I am needing more pills. I ended up taking 6 luratabs one night and still wasnt enough. Needless to say, I've tried everything up to this point and nothing seems to work. Except the patch. The fentanyl patches work like the BC patch. It lasts for 3 days disguising all pain before needing another one. The only drawbacks, I can't drive because it messes up my senses. Kind of dizzy and sometimes motion sickness from walking. I feel high the whole time. Which isn't a bad feeling..haha

Today I will be asking the doctor if he can perscribe me marijuana in a bag for me to use in my vaporizer. I bought the vaporizer a few mos ago and haven't yet used it. Waiting to see what legal pain meds would do, and waiting to find organic naturally grown grass.

The doctor also has me on a pill form of chemo called Tarceva. I take that every morning 2hours on an empty stomach and one hour before a meal. It only causes slight dizziness and hallucinations.

I had abraxxane yesterday and that only took an hour. The combination of these three drugs and including my pain patch, I have a hard time remembering anything. Esp at night when I am sleepy. Shawn told me that it's like he's talking to a different person. That I hallucinate. Last night during our conversation, he said that I interrupted him to tell him that his dad walked in my room with a big jug of choc milk to pour me a glass to drink. Weird thing, I vaguley remember any of that. Much less even talking to Shawn. Not sure if I called him or if he called me. haha

I should go, time to hop in bath and ride with Dean my step dad to go say by to Shawn, he's spending the next few days in Pennsylvania with his dad and bro in a cabin and take pictures!! I'll try to blog more later, if some of this is confusing, blame the meds!!! No, I'm not a druggy :p

Recent Petscan Results

2009-09-24T07:27:00.000-07:00

Okay, so, the petscan results have shown that the cancer is still active within my lymph system. The last 20 treatments, haven't shrunk the cells at all. So, Dr. Schreeder is collaberating with Vanderbilt's (Tennessee)team of Dr's/Researchers to see what experimental treatments they can put me on. I am excited about the experimental treatments, and have heard great stories about Vandy. Since my treatments will be given for research, my insurance won't need to pay for the chemos. Vandy's program also pays for lodging and gas, so I hear. So this is all good news!! BUT, this means mom will have to take off more time from work to be with me, and also I am scared of what the effects from these experimental treatments will do. And, will they work?? However, my support group (friends, family, bf, other cancer patient friends) are helping me to climb this mountain of pain. They stand next to me, with beautiful smiles on there faces, tears in there eyes and saying to me "Don't give up, You can do this" and all I can do, is keep going.

My first appointment with Vandy is Oct 1st.

The last few days have been very emotional for me. After learning that I will need further treatments, and unaware of what might happen, put me in a funk for a few days. This happens to me each time that I am rediagnosed with active cancer cells. Please keep me in your prayers :)

Saturday, I met with my mom and sister Hannah to tour an art show on Monte Sano Mountain. (Second day out since treatment on Aug 31st!!!!!) We walked around for 2hrs, it was rainy and muddy out, but was well worth it. I met with a couple artists, one was a preacher who's work was definitely intriguing and inspiring. The other was a woman who had beat breast cancer. She shared alot of her story with me, another reminder that I'm not alone in this.

Sunday, I stayed in the house for most of the day due to acheyness and hot flashes. It turned out that I was coming down with a cold. For the next couple days Mon and Tues I spent living on Shawn's couch watching a dozen movies. (he has no cable or satellite LOL) Pizza and soup have been my menu for lack of energy to cook anything.

Yesterday(Wed) I drove into town for Zyrtec and Tyleno. I had to wear my face mask so I didn't spread germs or pick any up along the way. It's funny the strange looks you get when your bald and wearing a hospital mask...anway, I broke down in the parking lot of the pharmacy, don't know why then and there. But for some reason the realization of my life, just hit me. And I cried. and cried. and cried. Thank goodness for my tissue box that wouldn't have been there if I hadn't been sick already.

Last night, before cutting shawn's hair. We cuddled on the bed and he let me share all my feelings. I poured everything out. All my worries, insecurities, angers, and pessiveness thoughts. I told him, that having cancer, esp undiagnosed, I felt like a cowgirl with a death warrant, and outside my window, is a rope tied to a tree with my name on it. It sounds awful I know. But I couldn't help but feel that way. After talking, and releasing the tension from all of this, I felt soo much better. He has a way to soothe my mind. He lets me pour it all out on the table. His hugs and kisses wash away the pain. For all of this, I am soo greatful he is in my life. He's helping me day to day with this. He's going through these treatments with me. Along with my family.
I couldn't imagine roles reversed and watching one of my loved ones go through this. It would tear me apart. I can only imagine what it is like for my loved ones to watch me go through it.

Today, I am feeling alot better, and am heading to my Dr. appt very soon. Today, if Dr. Schreeder can treat me with experimenatl drugs at CCI, or if I need to just go to Vandy (which I already have appt for) Thanks be to mom for double booking me, just in case! Also, I have a blood clot from the cellulitis area that was treated. Picline is no longer in my arm, I have pics of it's removal. It's gross!!

Will share more soon!!

Friends with Benefits

2009-09-16T08:13:00.000-07:00

So yesterday was great, my friend Amy who I've known since highschool, came and picked me up from my house. Which it's almost a 30 min drive from her house! Well, we went and had lunch at a great mexican place and shared the Veggie Fajitas!! Yum!! I warned her that I wasn't allowed to touch anything, so she opend every door, and even helped me open my menu :) How sweet is that, but other then the trying to prevent germs, our conversations were not cancer related. It was great being able to talk about different topics and catch up as if I were normal. Getting away from cancer was nice! She's a true friend, and very thankful for her! She almost didnt let me pay for lunch, and since she was driving me everywhere, I snuck 10 dollars into the gas machine before she had the chance to pay :p

One of our errands was to pick up my antibiotics from CCI. Doctor Schreeder ordered me some stronger meds to help with the cellulitis in my arm, and these meds couldn't be called in any where else because of how expensive they are. Xyvox, and they were $1,000 for the one bottle. Crazy isn't it! Amy couldn't believe the expense...then I informed her of how high maintenance I really am! Each time I have a chemo treatment, the drugs all together cost over $30,000!!! And I have had 26 treatments...that adds up! No wonder I am not allowed to drive!! I'm worth thousands of dollars!!!haha Thank goodness for insurance, which I have been paying since I was 18 even during unemployment and self emplyment. Can't say enough how important it is to have insurance.

Also funny note, 4 mos before I was diagnosed with cancer, I had purchased Disability Insurance through Illionois Mutual. The only reason I even signed up for it was because of a friend Zack Kyte I had met through the Junior Commerce of Iowa City Iowa. If I hadn't have become a member of the JC's, and hadn't met Zach who warned me how important it was to have some form of disability, I would not be recieving my monthly $1400 to help pay for bills and save for future. Everything happens for a reason. It's nice now that the only bills I owe are car payment, and my three insurances. Car ins, health ins, and disability ins. I live with my mom and stay with Shawn so there's no other expenses right now except for gas and medicines....Very thankful that I don't have kids at that moment.

Anyway, I got off subject, but I also wanted to mention another Amy I have met through blogspot. AmykissesMike.blogspot.com. Shawn came across her blog and read up on it before telling me about it. After informing me of her story, I was anxious to read it. Since reading her story, I have someone who is going through the same steps that I went through with dealing with cancer. I know exactly how she feels, the traumas and insecurities, all the goods and bads and uglys that come along with the diagnoses...It's great that our paths crossed and hopefully are able to help each other just by understanding what the other is going through...She's a very compassionate person, and very inspiring to me.

Today I am heading to CCI for my Petscan around 2:00 pm and should find out the results by tomorrow during my Dr appt at 9:00 am. I am sooooooo hoping and praying that the petscan will show negative cancer cell movement, maybe I'm just dreaming. If it doesn't, I know that I have a longer road to battle, which will depress me. But, I have to do it, I can't give up, and better, I can't let this cancer beat me. God knows how stubborn I am and that I don't take "no" lightly, so, the Devil can't win over me. I am too stubborn to stop fighting.

I've been stubborn all my life about everything, and truly believe that this whole time, God has been preparing me for this cancer. He knows I have what it takes, because I've proven it over and over again.

NO DRIVING.

2009-09-15T08:47:00.000-07:00

So today, I am home alone, and thinking I should pick my pencils and start sketching out pictures to paint. And, will probably go and skectch this rainbow trout that I've been eyeing for one of my favortie Nurses at CCI. His name is Pat, and he is very good at drawing blood, it's virtually painless. Unless you have built up scar tissue in your veins like mine. Before I had my pickline, I was stuck with needles each treatment. And when I started my weekly treatments, both arms had to have IV's in them. Some days, I could be stuck up to 4 or 5 times. My arms were bruised all over, after my second weekly treatment, Shawn kissed 12 bruises on my arms from needles. Thank goodness for the pickline! Even though it did give me a staff infection, it eleminates being stuck each time. So anyway, Pat still sometimes has to take blood for labs, and of all the nurses, he's a sure thing every time, never has to restick me more then once! I should have his picture posted by this weekend.

Saturday is the Monte Sano Art Show on the Mountain, and I am sooooo excited that I get to go! Just need to find someone to go with me now! Should find alot of inspiration and look forward to meeting more artists!

Right now, I am waiting for my friend Amy to call back. Since I can't drive, was hoping she could pick me up to hang out today. She lost her job, so she's unemployed for the moment, we were going to burn up some time together. But if not, I should be working on my paintings. There's a hug list left for me to work on!

Home from Hospital

2009-09-14T14:59:00.000-07:00

Finally home from hospital, being there for 3 days was enough, even though there are many who stay even longer! As soon as mom picked me up, I was ready to go somewhere, anywhere! So, we went to CVS the pharmacy, and I wore my mask over my face to prevent any air bourne germs and picked up my perscription. It was great! I grabbed a magazine Dog Whisperer and a pack of GIJoe's for my friend Ernie in Iraq. Ernie is a guy I met while living in Iowa. Just two years ago, I was grooming dogs part time at a Petland, and Ernie was the puppy trainer/kennel manager. Since then we've kept contact. Now he's a combat camera man in the army, and I have cancer. crazy crazy crazy! So, I'm sending him a care package with some fun stuff in it for to do when he's super bored!

Since my diagnoses, I really have tried to eat healthy organic foods, and cut out most meats. But, today after leaving the hospital, had to stop and grab an Arby's sandwich! Yumm! For the moment, I didn't care what kind of hormones went into making it, you only live once!

Contributions to my Support Grouop...

2009-09-14T09:37:00.001-07:00

...after my "exploritory" surgery in November, I was lying in bed praying to God during a crazy thunderstorm...I asked God to help me find what it is I was meant for..."What can I do, now that I have cancer?"..."What do I do with my life?", "What do I plan for?" ,"Oh Lord, Help Me!" ...and at that moment, a voice in my head repeated to me,...

"Just Keep Painting"... and with that, after 6yrs of putting away my art supplies. I picked up a pencil and started doodling. Sketchings that just came to mind. At the time I didn't have anywhere to paint, nor the supplies. So, in between chemo treatments, I used what money I had left to buy art supplies. By the time I met my now boyfriend Shawn, I had accumulated many paints and many canvases. But, it wasn't until after my 4th visit with my therapist Stacie that I realized I just needed to paint. No matter what kind of supplies I had. Stacie told me to paint what I feel, and just let it flow with no perimeters. She helped me. You wouldn't think that it would be so tough for an artist to paint. But with so much negative build up, and insecurities, self denial, you'd be surprised. Anyway, along with my family pushing me to paint, I started painting. And, with pictures on hand, that's how I got my job working with Rebekah at the My Spirited Art.com, art studio. Only a week after my first painting, I got a job at an art studio! Here are a couple of my paintings. The first one, "Beautiful Tulips" for Dr. Schreeder for tending to all his flowers enabling them to keep growing in a background of darkness. The second painting, "My Main Cat" is inspired by my Main Nurse Christy! at CCI. She has my back, and has been with me each week for the last four treatments. She welcomes me each morning with a smile on her face, and takes care of me all day before leaving with a smile. Remember, I am usually receiving treatment from 8am-5pm. I open the place up, and shut it down! *Christy's favorite colors are purple and red which I didn't really know about until after giving her the painting.-funny:)

This is my gift to give....

Labor Day weekend I will not forget. & the week following...

2009-09-14T08:19:00.000-07:00

9-14-09
Today I just got the go ahead to go home. It's been a long two weeks spent confined to a bed. How did I get here?Aug 31st I startedmy fourth weekly treatment. It ended that Friday. The treatments went well as to be expected since Dr. Shcreedertaken me off IfOS. No seizures this time around, and was able to go straight home. Over the following weekend, I was tired, and without my Zertec, experienced some major bone pain. It was the worst pain I've felt since my surgery. It was a long three day fun filled weekend for most over the labor day weekend. But I was so focused ontolerating my pain, that I wasn't able to enjoy the weekend as much. That Wednesday, I had scheduled a lab to havemy blood levels tested, and the results were all low. Red blood cells were low, and I needed 3 bags of blood transfused. To put things into perspective, most cancer patients only need one, or maybe two bags of blood. I need-ed 3! So, Wednesday I had the fist bag. I was tired and felt very faint during the first fusion. But, I was feeling so much better aftwards. Thursday I went back to CCI for my second and third bag of blood. This went well, and my energy was already coming back to me. I met a patient next to me with the same last name, and we learnedthat we some where along our family tree, we both derived from the same Scottland area. That was pretty neat.Definetly makes me want to research my history more. Anyway, after my second bag of blood, I had to go downstairs to recieve my magnesium which took 4hrs. In the first hour of transfusion, I really started feeling sick. Askedfor a throw up bag, and ended up puking uncontrollably. Christy my nurse dosed me with phenogren and benadryl. Bythen I called my mom at work, and she was on her way. By the time mom got there, I was soooo sleepy, could barely hold my eyes open. My bladder kept filling up from the big bag of fluids, so they wheeled me to the bathroom.Mom sprayed the toilet with lysol to disinfect it. The strong smell caused me to again have uncontrollable urgesto puke. It upsetted mom to see me this way, and she broke down a little. After all of this, my Dr visited me in response to my situation and to check my cellulitis accuring in my arm. With my white count sooo low and infection setting in my arm, he needed to send me to the hospital. "Great" I barely able to muster up. I knew it was forthe best, but all week of chemo and confined to a bed for over a week, spending the next 4-5 days in the hospitalwasn't music to my ears.
Christy my fav nurse followed me and mom to the hospital to make sure I got to my room. She even wheeled me to mybed. I love this nurse! From there, I just slept, not remembering much of how I got there. The first bag of antibiotics gave me what nurses call "red man syndrome" which caused me to swell and turn bright red all over. It was kind of a funny reaction. By the wy, the room I am in is a newly remodeled room, very spacious and gorgeousview from my bed. I am in quarantine. NO visitors.
So, after my long hard day, I phone my boyfriend to let him know I am okay. But tone in my voice, he knows betterthen to assume I'm just okay. And with that, I break down. I cry, and this is only one of a handful of times thatI have cried in the last 10mos. Shawn's soothing words help me to relax, he understands my frustration, and tells me that I am going to be okay. The only words I needed to hear. And they were true. I was going to be okay.
That night I slept, barely even noticed the fact the nurses were checking vitals and changing my fluid bags all nite.
Sat the 12th, I sleep until breakfast at 7:30. Pancakes and bacon from the cafeteria. Usually hospital food is gross, but I was soo hungry from not being able to eat since lunch on friday, I was ready to eat anything.
I was too groggy to do anything all day, so pretty much stayed in my bed. Little depressed. Talking to Shawn and spending time with mom were my highlights. Little did I know, that around 3:00ish, flowers would be sent to me!Shawn sent me yellow and purple flowers inside a big yellow coffee mug, painted with a big smile face! With the flowers a huge balloon and a sweet note that read "Even though I can't be with you, Just know that I am with you"-Shawn. The sweetest thing ever, so I called him to thank him and tell him how it made my day! Cause it did!An hour later, nurse tech walked in and took them away :( Apparentely with low blood counts, the immune systemshouldnt be exposed to fresh flowers. Along with raw fruits or veggies. Luckily, my room is inside of another smallroom that contains a sink counter where nurses wash their hands. So the flowers are able to sit in there for me to view through my door window :)
Sunday, blood tests show that my platelets are high and white blood cells are up to 1.4 from .8 which is a hugejump from day before! What a blessing, I am able to have a visitor now! And so I phone Shawn to tell him the goodnews! Surely he heads over to see me, knowing that it's what will make me happy. He gets here, and not used to seeing me in a quarantine, it takes him a few minutes to observe and let things sink in. Me, I'm excited to seehim and jumping for joy. Him, he's sad to see me here and although happy to see me, can't seem to hide his pain.We played cards and waited for momto show up with chinese food! Way better then the cafeteria food, so I was greatful! Shawn stayed for a few hoursthen headed home to finish his report. Later I made a few laps around the halls of my floor. Crazy thing to realize that I am in such a quiet area of the hospital. There's only a handful of patients on my side of the floorand they are all quarantined to no visitor, no gifts, no nothing. Peeking in on one patient through his door window, allowed me to view things from a different perspective. So this is what's it like for my family and friends.The feeling the get when they see me in bed, bald, weak, vulnerable, sick. It was heart renching. I think it is harder for my family to see me this way, then it is for me going through the chemos. It would kill me to see any one of my family members in my situation. Esp if were one of my sisters. I love my sisters soo much. Couldn'tand wouldn't ever want to see them in my shoes.
Today, Monday, I am blogging, and deciding what I want to do first as soon as I am able to drive again. Which shouldbe soon. I hope!

CANCER SUX BIG TIME

2009-09-12T16:12:00.000-07:00

To look at that sentence and read it to myself, about myself, is scary.

I am 26 and diagnosed with cancer.

I was diagnosed last November by two seperate Doctors. After an appointment with Dr. Schreeder at CCI, had immediate exploritory surgery at Huntsville Hospital. Dr.Kelly an oncologist/surgeon performed the extensive 6hr surgery. One ovary is gone, two lymphnodes were removed. And one giant, grapfruit sized tumor, gone. 36 staples later, there's a pretty cool scar to show off. 3 seperate labs couldn't diagnose the type of cancer. And it wasn't responding to any chemos.

In Dec I visited MD Anderson for a 2nd opinion and to my amazement, they had a chemo cocktail for me to try. The same day, my original Oncologist called and said he too agreed on treatment and could treat me at home in Huntsville. To me, it was hope, but reality was, this was going to be experimental.

First treatment began Dec 22nd of 2008. It was a one 9hr day treatment, with a mix of 3 different chemos. Cystplatinin, Abraxane, Evastin. It left me unable to provide for myself and mom took care of me for the following week. Bathing me, feeding me, nursing me back onto my feet again. Exactly two weeks later, my hair fell out. Mixture of tears and shower water down the drain...

Every three weeks I was on schedule to have 6 treatments. Thank God for family and friends! And, thank God that I had no other responsiblities but to get well.

In Janurary, Dr. Schreeder's nurse practioner Amy Sullivan had my blood tested for any cancer genes. My grandmother mailed me a letter from a distant cousin of mine in Pennsylvania of our family tree with cancer. Turns out that my Grandmother carries the gene mutation Muir-Torre Syndrome. So, after sending my blood to the research labs, I also tested positive for this gene. I carry the Muir- Toir(MTS)associated with skin cancer. Is a gene;variety/nonpolyposi(colerector cancer)HNPCC this gene increases the risk forcolon,uteran,ovarian,stomach,kidney,pancreatic,
brain, small bowel cancer by 86%. Persons without a cancer mutation in there DNA have 2% chances of being diagnosed with cancer, excluding if they smoke, drink, tan, etc...So, if I were to have kids, there would be 50%chances of my babies carrying the same gene as me.

Interesting enough, my tumor was not located in any of these organs. It wasn't skin cancer either. The tumor itself was attached to the inside of my abdomen wall, and was receiving blood through a vein that connected to my fallopian tube. By the time of my surgery, the tumor was consuming the left ovary, but wasn't attached to it. So, with everything out ruled, the only thing the doctors can compare my cancer to, is to a germ cell cancer. Very common to the male version of testicular cancer. Docs believe that when in my mother's womb, as my reproductive organs were forming and dropping from there original location, the fallopian tubes left tracts of the gene mutation DNA. Those small microscopic tracts couldn't be killed by my own immune system so over time, they multiplied and grew into a tumor.

Treatments were going good, and I was hopeful that the cancer was shrinking. I was lonely though, 26, no husband, no kids, no job, no dog, just cancer. Minus my family and friends :) So....I signed up on eharmony :) And would you know it, since March 18th, I have fallen in love with a man so wonderful, that I honestly feel like the luckiest woman alive. :)

The months of April and May of 09, I was pronounced cancer free after clearing a petscan. It was a great feeling, but too, it seemed too easy. Curing an undiagnosed cancer in 4mos...was I really that lucky?

No. Lucky in other ways, but not here. In June, the Doc placed me in a bed for 10hrs and started my new cocktail of 3 diff chemos. 2/3 were new chemos. Cystplatnin, VP16, IFOS. For 5days at a time, 9hrs each day, I bagan my second battle.

In between my second round of treatments, I was able to land a job working in an art studio. It was on a whim. Walked in asking about classes, and met someone who felt they needed my help. She offered me a job, and since then have been painting and helping with classes. :) God is Good isn't he. Slowly, even with cancer(My Curse) my life is coming together (My Blessing)

Since June, I have had 4 of these set of treatments. Now I sit in the hospital, writing my new blog about myself (influenced by my new love, shawn) and hoping that this cellulitis in my arm goes away... Last month I was here due to seizures after finishing a week of IFOS, and had to have an EEG, MRI. They gave me a beautiful bracelet that read "FALL RISK", which made Shawn laugh...haha This week, I am not seizuring, thank God, the doctor took me off of IFOS. But, since all my blood counts were low, they wanted to watch me as my staff infection was a high risk too.

This is a long blog, and my 1st blog, but I hope to make connections with it, and also to inspire someone who might need it...My next petscan is next week, and with Love on my side, am hoping for great results!