30 day challange

So instead of posting daily on Facebook I kept notes to myself and new that I would post them on my blog.

1. Ross
2. Sun
3. Good knees
4. The love from my Maggie
5. To have a job that supports my lifestyle
6. For those that were strong enough to fight for all of my freedoms.
7. Peace to myself
8. A job that I enjoy
9. My little nephews
10. The love I have for sports
11. Coffee
12. My health
13. Medications
14. Freedom to drive
15. For my family
16. For best friends
17. Having purpose to live again
18. My mom and dad
19. Benjamin Franklin
20. Doctors that answer your questions regardless of the hour
21. Water, food, and wine
22. Memories
23. For a good therapist
24. The experience of being bald and teaching me how to love myself regardless of how I look.
25. My crazy bosses and the lessons that they teach me.
26. Being able to express myself through writing.
27. The people that invented indoor plumbing
28. For my soon to be in-laws that are becoming to feel like my family
29. Clothes and shoes
30. My new recumbent bike.

I am so thankful to have my life. I love the way it is. There are always things that could make it better and that is why we have goals.

I could write everyday what I am thankful for. There are so many things that we live with that we don't even realize how important they are until they are gone. Don't take life for granted. Live it as full as possible. I realized that doesn't mean that I have to always be doing something. What is one of the most important things to my life? Napping. I have always liked to nap and so does Ross. It is one of favorite things to do.

I will keep this light...until my next posting...Happy Holidays.

Vacation

I just got back from the most amazing vacation ever. My mom, the wonderful woman that she is decided to take us to Hawaii to reward all the hard work that Charlene, Ross, Derek and Scott had done for me while I went through everything. It was a treat for herself too. I really didn't want to go to Hawaii, because at the time I was afraid of the sun. I don't want to get another cancer. I learned that it wasn't good to live in fear and wait for the next cancer to get to me. So we planned and planned our trip to Hawaii. I didn't have high expectation because I didn't know what it was going to be like. I had never been to a place like Hawaii. It took my breath away. It was Ross' home. He was so happy the entire time that we were there. We were all happy. The first day that we were there Ross proposed to me. I knew that he was going to since we were already planning the wedding. I didn't know what day or where. That was the surprise. It was very special and private and will only share a few details in person. That same morning Derek recieved a call that he had got a job at Amazon in Seattle. All this on our first day. This is the way to start a vacation. We saw several sites, we all went our own way because we are all interested in different things. We shared many meals together and talked about what we had done for the day. On Monday, we had planned to go to a temple and not really do too much but we ended up on our way to Honolulu and we were going there the next day to see Pearl Harbor but since we got lost, (apple maps suck) we decided to go visit Pearl Harbor. It really put things into view for me again. It made me very sad to know how many men, women and children had died that day. It was so peaceful to be out on the memorial and reflect on the terrible things that people had to go through. I have been through a lot but it doesn't compare to others went through in just a couple of hours. I wish that everyone would take interest in history, wars and the bigger issues in life. It would make all of our small things that happen everyday, just that, small things.

We ended up being able to find the temple on our way back. It was just as somber as the memorial. It was very fitting to put it all into one day. We were happy that we didn't do these two things on our last day but give us another day to reflect and enjoy our time in Hawaii. The temple was built without any nails. The temple is called Byodo-In Temple and that translated "temple of equality - not to discriminate". So fitting since the next day was going to be election day. I promise, no politics in this blog today. The Byodo-In was built to respresent the mythical phoenix, it's wings upheld by pillars of stone. Folklore tells of the phoenix arising from the ashes to reflect the promises of hope and renewal. This is what the trip was for me. Just less then a month ago my doctor told me to go and live. That is way the song feeling again touches me so much because the first time in almost 2 years I feel like I can live again. I have hope again for a brigh future. I look out and only see sunshine. Do you know what it feels like to have the new energy? It feels amazing and that is a small word to really put feeling into it.

As you can see my vacation was so far the best that I have ever been on. I hope that my mom reads this and sees how much she has improved my life. Without my support of my family, and that includes my dad who wasn't there I wouldn't be the person that I am. I could ask for better parents, sister, brother-in-law and step dad. Also to my wonderful man, Ross who has seen the worst side of me and the best side of and continues to stand by me.

With finishing this post, I know that I only gave a small glimpse of what my trip was like. As most of you know, my memory isn't what it once was. Ross and I have decided to create a scrap book of our vacation to Hawaii. I think that we will continue on taking pictures and making notes along the way.

It has almost been a full year since I have been doing this blog. I hope that one day to go through and rewrite it and make a book of it. Maybe? I am sure that my next post will be soon. I have a lot on my mind and am ready to share.

Love you all!

What would Benjamin Franklin Do?

Think about these quotes...I am sure that you can apply them to your life.

 Do not anticipate trouble, or worry about what may never happen. Keep in the sunlight.

We are all born ignorant, but one must work hard to remain stupid.

He that can have patience can have what he will.

If passion drives you, let reason hold the reins.

Educate your children to self-control, to the habit of holding passion and prejudice and evil tendencies subject to an upright and reasoning will, and you have done much to abolish misery from their future and crimes from society.

He that falls in love with himself will have no rivals.

Never leave that till tomorrow which you can do today.

Fish and visitors smell in three days.

And last...my favorite.

Energy and persistence conquer all things.

Just some things to think about and apply to life.  

Feeling again

I'm feeling better since you know me
I was a lonely soul but that's the old me
A little wiser now but you show me
Yeah, I feel again
Feel again...

There was nothing better than getting the news earlier this month that I was cancer free. To hear my doctor to tell me to go out and live and love made me feel like a brand new person. I have waited over a year to confirm that I was still in remission. Did I have doubts, yes I did. But who isn't after I have I gone through.

I have finished packing for my trip to Hawaii and am going to take off tomorrow. I have never been to Hawaii and really look forward to getting some relaxation and sun. There is nothing like getting some sun. I know, where my sunscreen. Don't you worry my mom will be there and will I am sure be more than happy to put me on a clock to reapply. I love her, it is because of her that we are taking this trip. It is the first time ever that we have taken a family trip. Good thing I like all of them. This is her treat to us, me, Charlene, Derek, Ross and Scott for all their support that they have given me in the last year and half. Without them I don't know what I would do. I don't think about those things. No need to.

I am starting to live again and it feels amazing.

I had a co-worker come up to me today and tell me that she had read on Facebook that I was cancer free and it made her so happy. She tried to explain how connected she had felt to me because 5 years ago she was sick and in her country they didn't know what was wrong. She said she was in the hospital for 40 days. Oh boy do I know how that feels. I just wanted to hug her and tell her that everything is going to be okay. It is one of the main reasons I have decided to write today.

How can we better each other lives? How can we get rid of the bad from our past? I have come to terms with what has happened in my life. I still have people that I don't want anything to do with and really don't care what ever happens to them. But I don't spend any of my energy on them or looking back. By no means am I perfect. I have a mouth that can't seem to shut. I love to express myself.  Anyways, moving forward. I would love for everyone to be happy all the time. I would love for no one to feel pain. These things, I can only do by sharing my positive energy with others. I can hug you everyday. I can tell a corny joke. I can make you laugh 10 times a day. I can dance around like a white girl. Did I make you smile yet? The one person that needs to be happy is yourself. If you can't find happiness within yourself then you can't share with others.

I can tell you that my relationship with Ross is like no other. I try not to compare to others. I have been told that what Ross and I have gone through is something that people that have been together 30 years might go through. Where I am going with this is...tell your partner that you love them. Tell them how special they are. Communicate always. Tell them your feelings good or bad. Spend time with them and nothing else around. Don't take each other for granted. Look into their eyes and give them a compliment. Kiss them on the cheek. There are so many small things to do to make another feel better, they don't even have to be down. I am not an expert in relationships but I understand the importance of sharing feelings because you never know what the future is going to hold.

I can't wait for what my future holds. There are so many changes going to be taking place in the next year. Then from there you never know what is ahead. So many questions, oh change how I will take you.

Live, love and laugh!! Those are the only things that you need to remember. Try to do it everyday. Keep positive!

With love,
Jenene

This is mine

Hmm, how do I feel? Well, I am pretty happy with life right now. I bought tickets to a couple of concerts that are coming up. One is one of my favorite bands, Passion Pit. Makes me want to get up and dance when I hear them. They make me very happy. Let's see, politics aren't to be discussed, since I might offend someone. Ha, I so don't care. My opinion is my opinion, and you can keep yours. I do educate myself. I stay up with current news. I read a lot. I don't have my blinders on. So that being said. I think that Paul Ryan is the worst choice for Mitt. I have never so strongly disliked a candidate. I think the last time that I was pro-life was when I was 16, even before I could vote. By the time that I was 18 I was pro-choice. Could you imagine someone trying to tell me what I could and couldn't do with my body. Ya, like that would happen. Let's think about this, what if I wasn't able to get birth control because it is morally wrong. I wonder how many kids I would have and how many baby daddies. I mean really. No kids and stable or kids and probably needing some state assistance. It really isn't that hard of a choice. Now that I don't have to worry about that, it is onto the next thing. Healthcare! Alright, this is to all my friends that are my age. Listen to this. I was on Medicare when I was in the hospital. They lowered the cost of medications and also covered different bills. It was a life saver. So, when you hear about Medicare, it isn't just for the old. You are going to need it at some point in your life. Also, pre-existing conditions. If I ever work at another place, with Obamacare in place I don't have to worry about being denied insurance. But if it gets turned over then I will always have to worry if I will be able to. It is unlikely that I would be able since I had a life threaten disease. I can't even get life insurance for 7 to 10 years. Oops, sorry honey. Think about your future and your kids future. Do you have a will? Do you have a form with the hospital saying when it is okay for you to be saved and when to stop saving you? What is something happened to you tomorrow and your kid was left alone? Who would they go to? Just because we are "young" we have to think about the hard things in life. Does someone have the passwords to your bills, email, and bank accounts?
Did you know that much about stem cell transplants? Without the testing they would be able to cure diseases. I might not have been successful with my transplant.
What is all my point to this? From the time that you are born to the time that you die that politics are going to be apart of your life. Educate yourself. Be a voter! Make choices on what you think, not what I think.
Oh by the way, this is my blog. :-)

Writing to release

Even though it has only been a couple of hours since my last blog. My mind has had the time to wonder. I sit in the dark of my bedroom with the lights off with spa like music playing in my ears. It sends me in to relaxation. I spray my pillows down with lavender. I put dry lavender underneath my pillow. I take nice slow breaths and close my eyes and imagine that I am laying on the beach some where warm.  Not a tropical place where you would most go to but the Carolinas. I have never been but for years I have always pictured that to be my relaxing spot. I see the birds fly over to take my stress away. I listen to myself breathing and finally with all the music so softly playing in my ears. I can be fully relaxed and go to sleep.

Everyone needs to find that place where you can be yourself and not be afraid. Most of us live in some sort of fear. I fear when I get on a plane that something is going to happen. After a couple of drinks and some anxiety meds I am good to go. My biggest fear is not having control. No, what do you say, me a control freak. Yes I am! I like routine.   I like for things to be the same. I like to plan things out. I don't like surprises. But really am I any different than you? Fear is not something that we want to live in but because of movies and media we tend to over think things and let the fear start to eat at us. So back to my relaxing...what do I do with these fears. I put them into beach balls, makes sense since I pick myself being at the beach. I fill those beach balls up and I hit them as hard as I can out into the water. Sometimes they come back and I have to deal with those fears, but that is okay because it is apart of life.

I want you to close your eyes for a moment and think about someone. Five, four, three....

Did you think of yourself? Why not? Do you do something for yourself once a day? Most of us were raised to be the caregivers. I know that I was. I was 9 years old when I stopped going to daycare and stayed at home with Charlene who was 7 at the time. I was so little but so mighty. I could take care of my family. I made sure that we never used more than 3 square of toilet paper at a time. We had to save money wherever we could. So, with this ability to take great care of others, did I learn how to make myself important? I sure didn't. Does that make us selfish if we put ourselves first? Now many of you will say that your child will come first before you. Remember I will never understand that. I will never have that feeling of being a mother. But it doesn't matter, man or woman we need to make time for ourselves even if that means going to Baskin Robbins and getting ice cream for only yourself. Getting yourself a massage, by the way I did that last week and I loved it. I need one every week but that is far too expensive. Still I went out and did something for myself. I was at the store yesterday and I bought myself some new scissors and a tape measure to see just how around I have gotten. Well that doesn't sound like I have treated myself, but really what that means I am setting goal for myself, not anyone else, not even Ross. He doesn't care what I look like. He has seen me at my worst, but I want to look my best.

So think about this, what do you do for yourself? Remember this too...we come into this world alone and we die alone. Two guarantee in life, taxes and death. Thank you Ben. Let's not worry about tomorrow but work on how we are going to make today a better day.

I have recently started a bucket list, it's small but it is a start. I don't think that I am too young to start one. One day I hope to have my journey published. I wonder how many of my close friends could even guess one of things on my list and it can't be Boston. LOL.

Let's go back to the beach and curl my toes in the white powder soft sand. Laying down with the sun beating down on my face. Letting the warmth sun overcome by body with happiness and joy. Just to be in the moment. Taking the time to stop and take the world in. You can't hear anything around you except the light wind and the crashing of the waves. Then you look up and you see the beach balls that you have hit into the ocean have gotten so small because instead of coming back they are headed out to sea for you never to see them again. Getting the feeling of relief that this day has come that you can put your fears out to sea and they are never coming back.

Love,
Jenene

Hello world!

Last time I blogged I had fallen down the stairs at my house. This time I was just trying to help Ross carry a table downstairs and by the time I was done I couldn't breathe. By 2 am I could barely move. I am very happy that I can take meds right away and not suffer. I didn't go to work because how much pain I was in. I rated it at 9 out of 10 on the pain level. What is my body doing to me? I am so old on the inside then what my mind is. I am sure that I repeat myself over and over again because the battle seems to never end.
Okay, lets talk about something that is super personal. Sex, is it true that as you get older your sex drive goes down. If you sexual peak for woman is 30, then I should right on track. But from all the treatment they told me that I would lose my drive. I was thinking that they were crazy, that would never happen to me. Oh but it did. Not okay! Gone just like that. Closed, shut down. Not coming back. It is so sad. Well I can take hormones and bring everything back to life. It isn't worth is because of the chance of getting cancer again. But you know what? Ross and I have one of the most sexual relationships that I know. He makes me feel so loved.  We were given a challenge at a much younger age and we found a way to be close and have that spark every day. It is the most amazing feeling to wake up every day and know that I have someone that loves me whole-hardheartedly. Sex doesn't mean getting it wet, it means making that other person feel special and in that moment there is no one else but just the two of you.
I recently heard that someone and their partner were discussing 401k and what they need to save and I thought to myself, wow, I worry about writing my will and not making long term plans more than 2 years out. Do you even realize how one day everything can change? Most of you won't have that experience. Another cancer survivor said that she wished that everyone would have to go through something so difficult to have full appreciation for life. I kind of have the same wish, but realize it doesn't always make a better person.
I am counting down the days until my next bone marrow biospy, to tell me if I have leukemia again. It is the reason that I have been so stressed the past couple of months. I have 31 days from now. Then I probably have to wait another week to get the news.
How the hell am I supposed to keep that smile on my face. It is so hard to not play the what if games. Last time I was told, it was sudden and had to be dealt with right away but this time if it come back with bad news, will I do all the treatment again. Will I get in my car and never come back? All these different thought good and bad going through my mind all the time. Every day I think about cancer, every time I take medication I think about cancer. Every time my knee starts to give me trouble I think about cancer. Looking in the mirror I think about cancer. It is ALWAYS on my mind. It is amazing that I am able to get so much done at work and stay focused. The people at work at the ones that keep me sane. They keep me busy with my mind. I forgot to set up billing for a group, this was probably the first time in 3 years. If I would have gone to work instead of calling in sick I would have caught it and there would haven't been a problem. I state that I am not perfect and take responiblilty for my mistakes. I own my mistakes. You should too! Stop pretending to be someone that you aren't.
I have made my list and am ready to fufill it. Are you? Are you doing what you love? I love change
but hate it all in the same breath. 
So you to I say this "Hello world, don't mess with me while I ride this high." with a smile on my face looking to the sun!

Love,
Jenene

July 31st - another step forward

I went to the doctor today. I am so happy that I am able to get off some of my medications. It is a great day today. I love being able to look to the future even if it is only two weeks away.

It has been way too long

I haven't written in so long I forgot that it is such a great release of stress. What do you say? Stress? I have once again become so stressed out with life that I am making myself sick again. It has since passed, because once I know what the problem is I try to fix it right away. When the time comes, and it will be in a few months I will go into greater detail of all of my stress. Then you will wonder how I manage even to stay happy.
I was talking to a co-worker today about speaking in front of people and how sometimes it makes me nervous to talk in front of my co-workers but when I talk in front of a large crowd it is so different and easier. I have been praised for the strength that has gotten me through this journey. I don't know where I find it but I do. I keep telling myself to live in the moment and make the most out of everything. I love my life so much, I am so happy to get up everyday and go to work. I am sure most you can't say that. I truly do love the job that I do. Okay, this is totally not where I was going with this. So back to my co-worker and positive thinking, I told her that negative thoughts are just as easy. I have been going to therapy since before I had my transplant and wow she is amazing. I told her that all that I gone through had made me a better person and that I didn't have an anger issues. I think I am in a 12 step program without actually being in one. My mentality is not all pink roses and rainbows. I seem to some how by the end of the day get over my issues and climb into bed with a smile on my face because I am alive! This is for my sister, I know that she will read this, and she will surely tell that I told you so, but the first step is admitting, I might have a little of an anger problem. I am good at controlling. I show little remorse to others and I can't fight with my body because I am too weak, but I have a nasty tongue and will say things that you wouldn't ever thought to be said. When it is all over I don't feel bad but better that I did it. My voice is the most powerful thing that I have. I choose to use it wisely, which has only come with age.
I have decided after one training that I wasn't able to do a half marathon. I am prone to falling and injuring myself very easily. I have messed up my knee and am not sure of the long term effects of it. With all of the issues mentally and physically in the last couple of months, I mean my new issues. My attitude hasn't been all the best. Today has been a turn back to the positive. I was asked by OHSU to tell my story about young adults with cancer. As all of you know, I love to talk and tell my story. I have been come friends with a woman that is biking across the US to raise money and awareness for young adults with cancer. So that is what I plan to do, instead of trying to do a marathon or something that is going to wear me out, I am going to use my voice to get across to as many people as I can. I am very passionate about leukemia and the side effects. Why are young adults statistics not changing? Why is our survival rate so low? I hope that in my life time there will be a cure for some sort of cancer. Just one would be great, but really it is the side effects of all the medications that we have to take. Moving forward, my attitiude will be better and just in time for another baby to be born. I can't wait for little Rocky to come. Hello, Jayme! What is his name? I will call him Rocky for the rest of his life, ha! Just kidding.
Do you think of someone every day that gives you inspiration? I look within myself for my strength and always am thinking about Benjamin Franklin. I wouldn't be me if I didn't mention him. It is all about choices. My choose to get out of bed everyday and go to work. Sometimes I choose to stay in bed all day. I choose to share my story in hopes that it will inspire someone to become a doctor. The average age for a doctor is 56 and the average for nurse is 53. What? Really? I got my doctor to really go off about healthcare. It was very intresting and sad. I feel like I could be a doctor with all the things that I know about leukemia but that isn't who I want to be. Inspiration is such a great word. What will inspire you to make a difference? I had to learn the hard way, which most of us do. Make your life worth living. Don't be afraid. If I can battle cancer then you can do anything.
Did you know that my chance of getting cancer is ten fold compared to a woman that is the same age? Did you know that I have been set into menopause and is causing me to lose my bone density? Or how about that my kidney and liver are always going to have to be watched and if I have a few drinks that it will make my liver look like I am an achololic? My body at anytime, for the rest of my life, can come down with GVHD? I have already had it twice in my first year of recovery. Oh, the curly hair thing isn't cute, it is annoying. My two biggest complaints have to be memory loss and fatigue. It drives me crazy that I can't remember things and I hate being tired all the time. These two things won't get better with time. I have accepted these things and that is why I am able to live a happy life and not live in fear anymore. I was so afraid of the sun, I am going to get skin cancer if I go in the sun. Well, if I stay in all the time, that will cause other health issues. So you see I can't be afraid of what might happen. Today is today and I wouldn't want to be anywhere else. Ross is next to me and that is where I am happiest.
I won't take so long to post a new blog...lots of exciting things are in the future.
Love always,
Jenene

It is almost a year

I am really looking forward to going on vacation on May 24th for a whole week, well okay, 6 days but close enough. Ross and I will be celebrating my 1st birthday while we are there. I can't believe that it has almost been a year since I received my transplant. Oh boy how that year has been a big one for me.

I was thinking back to when I was in the hospital for the first month and half and wasn't able to have any contact with anyone. I completely had forgotten about that. I wanted a real kiss, but could only kiss through the mask. Everyone having to wear gloves and not being able to really touch anyone. It is amazing all the people that came and saw me. It is still the most that 14k has ever had for how many visitors came to visit one person. I am so thankful for all the support that I got during that time. A year later and I am having the same food cravings, pizza, cereal, and ice cream. Weird!! They aren't uncommon foods, but still.

Last week was my first time that I worked a full week. I couldn't believe that I did it, but I did. I even worked a 12 hour shift. I had an emotional breakdown on Thursday, it made me realize that I am not 100%. I couldn't get my emotions under control. All I wanted to do was run out of the office and go see my therapist. She is such a lifesaver. I didn't get to see her last week, I am going to have plenty to talk about when I see her next week. My current fight with myself is that my mind is only 30, I want to push and push the limits but don't know where that limit is. I have cut back on somethings, and it brings me to tears to feel like I am failing because I can't do it all. My body is that of an 80 year old woman. When Friday hits I am in bed by 8pm at the latest. It makes me sad to not be able to go out and be like the rest of my friends and everyone I know. Then I sleep for 12 hours or more. I want to be normal and be able to be me again. I love that I have the support from other cancer survivors. Shout out to Oncology Youth Connection!!! Look them up and feel free to donate to them. They are amazing!! It makes me realize that I have a long road ahead of me and I need to stop trying to rush things.

That is me...the little rabbit that could. When you have been through what I have been through, all you want to do is live. Each person is different with how they handle things, and I want to travel. I don't want to be sitting at home every weekend. Then the reality sets in,  I am no longer the rabbit but more of a turtle. My mind says go, my body says sleep!! This is my daily dilemma. Soon, I hope, I will find that happy medium. I still feel like an jerk for getting so emotional last week but I really couldn't handle it. I have a backbone now, I have more confidence than I did before, yet I can't handle the additional stress on top of the stress that the normal day to day. I wish that it didn't make me feel like a failure not being able to do everything that I used to. I am the hardest person on myself and want perfection, damn you Stephen, you have made me want to be a perfectionist. I am not really mad at Stephen, he has been one of my biggest supporters and the best boss ever. He is so wise and knows when I need to be reminded that I need to take it easy. Again, it hasn't even been a year since my transplant. I amaze myself, and know I wouldn't have had it any other way. I wanted to go back to work the week I got out of the hospital. I keep pressing them to let me, luckily, I have a really smart doctor that knows me well enough to keep telling me no until he is ready.

So being the rabbit that I will be again. I am going to start training for the Portland half walking marathon in October. I will need donations and this will be a tax write off. I am setting a goal for myself that is reachable!
Here is the link.
http://pages.teamintraining.org/oswim/portland12/jmphilips503

If you need more information please feel free to email me at jmphilips503@hotmail.com or text 503.341.3498

I miss a lot of you and would love to catch up.

Hugs and Kisses!
Jenene

Don't take this personally...

I went to the doctor today, but not my favorite oncologist, but a new one for my adrenal glands. I thought it was going to be more exciting. I was hoping that I would get off of the prednisone and would be put on a new medication that would allow me to loose my puffy face and belly. I sure was disappointed to learn the the new steroid has the same effects. I am hoping that even though they might have the same effects, that it will still be different since the prednisone is so hard on the body. I am going to be training for the half marathon in October and don't need anymore speed bumps in the road. I have to lower my dose of prednisone very slowly and the switch. Why can't the doctors tell you what can happen to you after a transplant? Granted there probably is about 100 things that "could" happen, but really it would have been nice to know the different parts of my body were going to act up. I guess because there are so many things that can happen, why scare the patient? The hardest part is dealing with the emotions that are ALWAYS running through my mind. I went and saw my therapist today and she reviewed all the things that we had talked about in the last couple of weeks. I honestly feel like I change my mind everyday. I am not sure if other cancer survivors feel the same, but you have this mentality that you want everything to happen now because you live in the fear of the cancer coming back. I really don't like fear and I have overcome a lot of things because of what I had to go through. The future is so unknown that it makes me want to make all my decisions today. Which then causes me to change my mind everyday. So not only does my body struggle but my poor mind struggles right along with it.

I got my review yesterday and it went well. One of the questions that my boss wanted to know is where I want to go with my career. He said that I didn't need to answer the question right away or even in the next 6 months. Currently my mind set is to stay put and go on as many vacations that I can. I might not be able to leave the country right now but there is plenty of the United States to see. Oh how I want to go and see Boston. I think about it all the time. Do I want to stay in hotels or move over to something that has to do with leukemia and lymphoma? I am not ready to answer that question yet. I told him that I would stay put for the next 2 years, but don't think that in those 2 years that I won't still be learning more about hotels and sales.

With all that has happened to me, I have become less sympathetic and I know this. I will work on this because my therapist says that I need to and I know that she is right. I also have become more aggressive in the decisions that make even if I change my mind. I know that sounds like an oxymoron but if you know me that is who I am. I don't think that I have been come the type A personality but am very close.  Let's take this back a few years. I was 17, and I wanted nothing more than to move up and be a manager. I worked so hard, I knew everything about that hotel. I did what a normal front desk person wouldn't do. I was a go getter! Then I got to be the manager at the age of 22. I couldn't believe it, I was in charge of 17 people. I was so proud of myself but then it became too much for me. I had a shitty boss and I do blame him for a lot because, well he sucked! I ended up getting fired but that was the only way I was going to leave. I went out and partied it up afterwards. I was so happy to be done with that job. About 2 months later is when Colin died and that like I said before was the beginning of my downward spiral. Then 2 months after that I was robbed at gun point. The messed up part was the guy told me that he was doing because his son had cancer. He didn't have a son that had cancer. I worked that job for another 2 years after that happened because I was determined to not let it affect my life. It really did though and for a long time. I was scared all the time, I couldn't be alone. I had a hard time going to the store by myself. All the trauma had made me a meek and timid person. I second guessed myself all the time. I need approval for everything that I did. It wasn't until this year, 2012, six years later that I was finally able to go out to a restaurant by myself. I seriously had never done that in all of my 30 years. I have once again became that strong person that I was before. I really never lost the go getter mentality, but it is back in full force. I am not intimidated by anyone anymore. I stand my ground and have a backbone. Yay me!! I am still a very caring person but when someone dies don't make me feel guilty for living. It isn't my fault that they died and that I lived. It really makes me feel awful, because I don't know what to say. I know what it feels like to lose someone and all the pain that it causes. Cancer has no age and death has no age. Life is sad, I get it.  Learn to live in the moment and not make such a big deal about the small things. It just isn't worth it. I feel like I got on my soap box a little. I just have to release my feeling because I don't need them all trapped inside of me. I am constantly changing and dealing with what I went through, so I hope that I don't offend you, but if I do then you really don't know me.  Oh yeah, that is the other thing I have to learn again, the filter. Damn it I have been keeping my mouth shut for the last 6 years. Guess what?? I have an opinion on everything and I want to be heard!!! I hope that none of you ever have to go through what I have because well it sucked, but remember this, cancer makes you realize what is really important in your life. Cancer is not short term, it might be gone but won't EVER be out of my life.

I stated earlier that I am going to do the Portland half marathon in October that means that I am doing Team In Training. I will be asking for your support once again. I need to raise $1500 at the very lowest. I haven't set a personal goal yet. I hope that everyone can contribute so that we can find a cure and not make people have to take these meds that cause so many problems. Here is the link for my fundraising page.

http://pages.teamintraining.org/oswim/portland12/jmphilips503

Tomorrow I meet with the general manger and HR to start not one but two new committees. I am starting a care committee to boost team morale. I know, not everyone can be positive all the time, thank you Trina, but a little treat each week or once a month really makes people smile. I do want to give back to the hotel that has been so great to me. I have a meeting to attend tonight to try to get the Heathman become a corporate team for Team In Training. I just need two more people to sign up that work at the hotel. I will get to that on a later date. For now this is enough.

Life is grand!

Over the last few months I have taken you through what I went through in the hospital and the emotions that I felt. Since January I have come close to be hospitalized once, which isn't all the bad. I am starting to go to the doctors only twice a month which is huge since I used to go every week up until 2 weeks ago. I can't tell you how many times my arms have been poked. I was starting to miss my port, but not really. I rather keep getting poked then have that thing in again. I am going to see a specialist on the 17th for the adrenal glands. I have already done the testing that they need, now it is time to get on a medication that I can stay on. BTW, I HATE steroids. My dad doesn't like it when I say hate, but this one drug has done all sorts of damage to my body. Hopefully I will be able to get my body back to being 30 and not feel like an 80 year old. Then again it is another steroid that I will be going on and probably have to take for the rest of my life. But as long as I am living that is the important part.

The blog is one way for me to release what I am thinking and not worry about having to hear anything back. The emotional drain that I go through on a daily basis is crazy. I am sure that is why I am on half the medications that I am. I went back to work after being gone 10 months. Really? 10 month is all that it took me to go back to work. I must have been really bored at home, just kidding. I haven't heard of anyone going back to work that quick. I have this fire in me to do my best, I lost it a while ago but I found it. I carry myself with confidence and grace, ha-ha, just kidding again. I have no grace, that is why I fall down all the time. I am ready for the summer and all that it has to bring. I hope that I don't have the fear of traveling again like I did in February.  I am going to be going to Vegas again but this tie for Ross' birthday. Just the 2 of us. Of course I will spend time with my sister and brother-in-law but most of the time will be spent at the pool.

Seriously, I went from wanting to buy a house and settle down to wanting to get out and see the world or the United States at least. I can't travel out of the country for a while. Just this week I found out that it would probably be a couple of years before I get my shots. That is the thing, I go to work, I eat and drink just like everyone else but I have all these pills that I have to take and worry about my skin all the time. I want to forget for a day that I don't have to deal with this everyday of my life. I never forget but I am going to make the most of it. I keep my positive attitude, keep smiling, don't let the small things bother me. Every once in a while I do want to punch someone, but instead I try my hardest to put it behind me because it isn't worth it. Still a couple of weeks after dealing with a certain guest I still get angry thinking about him. I should call him and his assistant up and tell them what I have gone through and play my cancer card. I rarely ever do that. I am not a survivor I am a warrior who is still battling. I would love to be the pink warrior but I think that people would think that I had breast cancer. I guess I will be the orange warrior, the other pink.

So, here I sit on Easter, thankful for my life, but I am not a religious person, because there is no one that got me through this than myself. I believe that I did this on my own, damn it that makes me one strong ass person. Sure, I give lots of credit to the doctors and drugs, but I was the one that had to be mentally strong enough to come through on the other side. Being on the other side is just as difficult, with all the daily drama, but it so worth it. What is the point of this blog? Maybe one day I will figure that out until then I will keep typing away for everyone to read.

Giving credit

Why is it that I am giving credit to everyone else but myself? It just isn't me to take the full credit, but I guess that it is time for me to take the credit. I should realize that I had to find it within myself to beat this cancer and that no one else was going to do it for me. I am trying to still understand all that I have gone through. It is hard to realize a year ago that I was in a hospital and really just beginning my journey.  So how do I take credit, I guess by enjoying my life everyday. Most people say that they couldn't have done what I have done. Was I really given a choice? I don't feel like I was but I guess that I was.
I sit and think a lot about the past, present and future. I wonder what is going to happen in the next couple of years. Where did I find the strength to beat this? When something happens to me, how can I continue to only let it get to me a little bit? These aren't what if kind of questions, the answers are inside of me but I don't know what they are. From day one when I found out, I really didn't even cry that much. One of my co-workers reminded me that when I told her that night, that I was easy going about it and wasn't telling her the truth. I wish I hadn't been telling her the truth and it wasn't really happening. It's funny how a person's mind can handle so much if you are strong enough to handle it.
I was looking in my year book today for someone that works with my mom and decided to read the comments. I might be strong, but man do I have a soft heart. Because I promised myself that I would put it all out there, I will share with what I read, but not word for word. My ex-boyfriend Colin wrote that he is was sorry for all the sh** his then girlfriend put me through and to not hold it against forever. It struck me, forever! That is a really long time, and it made me start to cry. No matter what happened in the past, believe me he was forgiven and I never held it against him. When he did pass away we were still friends and that was 5 years after all the drama had happened. I wish he would have fought for his life like I did. I would love to pick up the phone and call him. Maybe that is part of why I have taken this so easily and been so determained. I wasn't going to be the same!!! I can't tell you how many times after he passed away that I would go out and get drunk out of my mind, then lose it and cry for hours on end. I am not a perfect person that has been happy all the time with a great attitude. I am happy now because of what I have gone through to get me to this point in my life. Feeling that heartache is nothing like I had felt before. I literally could feel the pain in my heart and that is why so many times in the last year that I have told myself, you can't give up because you can't hurt the people that know you. I couldn't let anyone else feel that heartache that I did. I have taken that pain and turned it into something positive. I have looked at leukemia as a lesson and not as a cancer. I was given this cancer because I can handle what it brings and I won't let it knock me down. I refuse to let it have a handle on my life. I control what happens to me. I give speeches to people now, because the more that are aware of cancer and what it does to your life the better. I hope for a big impact on their lives. If I can show one person that life is short, take risks, and enjoy all the small things then I have succeeded. I want to take his death and me getting the same awful cancer and make good of it. The people that knew Colin knew what a great guy he was and that he was taken too young, but he has given me the strength to fight for my life because I refused to have his outcome. There was not a chance that I was going to die. I only had like a 30% chance of beating this. I think that even might be a little high on the percentage. I give my 100% into everything that I do and since this was my life on the line, it was going to give my 200%. So, why don't I take the credit for what I have gone through, because I truely believe that I have gotten my strength from others that have passed. They are my angels.

The What If's??

What if none of this had happened, where would my life be today?

It has only be a year since I was diagnosed with Leukemia and so much has changed in a way that I never saw coming. First, most of you don't know this but Ross and I broke up the night before I was diagnosed. When I was diagnosed he was given the option to leave by both of my parents. So, what would have happened with Ross and I if I hadn't got diagnosed?
Where would everyone lives be?
The change that was forced upon us, did I take it with grace or fall flat on my face?
The chain reaction that I caused, will I always feel guilty for messing up my family and friends lives?
Am I stronger person for fighting for my life or was it luck that things landed the way that they did?
Do you know what it is like to be in a relationship and not be able to kiss them, because he had to wear a mask, gown, and gloves? It SUCKS! No direct contact with anyone, gives me a very lonely state of mind. Do you know what it like to be worried all the time that you are going to catch some one's cough or flu? How about the sun? Everyone loves to be out in the sun! If I am in the sun, certain medications will have a bad reaction and I could possibly get GVHD again.
What if the cancer comes back or I get a new form of cancer? Will I ever be able to travel abroad without having anxiety of catching something on the plane?
Will I always have to wear a mask on the plane?
What would my attitude be? My outlook on life has changed so much. I don't see getting cancer as a blessing but rather just a challenge that I had to overcome to give me a real chace at living. I am sure that I will still have anxiety problems.
Would I still be letting my co-workers walk all over me?
Did I really get a backbone to stand up to people while I was in the hospital?
How could this one thing change me so much?
Did I let the leukemia change me on purpose?
The biggest question is: why did it happen to me? I will never know the answer and I am fine with it.
Why is it whenever I am watching TV and they are talking about a relative of someone, the person has been diagnosed with leukemia? I already was aware of the cancer, but it seems to be out in the media much more.

What if I wasn't in the hospital when I had my seizures? That is a pretty easy answer, I would have died just like a friend of my sister's. It is that plain and simple.

What if I hadn't gone into remission and my sister wasn't my match?
Would I still be in the hospital?
Would have I died at this point?
What if I didn't care about having a long life and went out and partied like it was my last day to live?
Who would I be today?
What if my ex-boyfriend hadn't died and given me the strength to fight this battle since he didn't fight for his life?
What if I wasn't diagnosed, would have I wanted children? With that choice taken away, I have a new hole in my heart that makes me not want to be around kids, because it hurts to know that will never be me. I can't relate to new mommies and will always feel left out. Over time I am sure that it will get better, but how long will that take?


I could simply be a memory.
I could have continued live in my bubble with no substance, with no happiness insight.
I would have like to believe that Ross and I would have worked it out but at that point in my life I was ready for change and I wanted him to be apart of it, but he wasn't ready.
If I hadn't been diagnosed I would be in a financial hole still.
I miss my own room and having the time to myself, but now wouldn't change anything. But I know I would still be living by myself.
I would have continued to let people walk over me.
I would have still be intimidated by a lot of people.
I wouldn't have had the passion to get involved with TNT and OYC.


What have I taken from this?
I have true love and full trust with Ross.
I have no problem telling people what I feel and knowing that my mind is made up.
I have learned to put my health as my number one!
I have learned to not take life so seriously.
I have learned to control my stress.
I am able to speak in front of large crowds.
I have made some great friends along the journey and lost some friends.
I feel like I can take on the world, and have no fears.

The leukemia has given me a chance to live again with a whole new body that I don't even recognize when I look in the mirror. Some of me is still the same but most of the new me, is new.

So, what if these things had happened?

There are no what if''s, because we don't look in the past for the answers. I am only moving forward with my life.

Update on Health since the 22nd

I am sure that everyone has been worried about my health. I think that I have been more worried about my health. I was worried that I was going to have to be hospitalized because I came down with GVHD of the stomach again. I was afraid that I was going to miss work for a while. Without even getting GVHD I still missed two weeks of work. I live for my happiness and being able to work and my job really brings me happiness. I feel like a failure when I am not able to work. It has been a really long two weeks and come this Tuesday the 6th will be three weeks since I have tried my hardest to figure out what was wrong with me. There was several different symptoms that could be causing what was wrong with me. Recently, I was slowly taken off of prednisone which is a steroid that does a lot of good and a lot of bad to the body. List of the withdrawals that it may cause; joint pain, muscle pain, fatigue, headache, fever, low blood pressure, nausea and vomiting. Out of the seven symptoms that were possible, I had everyone but the fever. I couldn't believe that I was having to go through this again. The feeling of being so weak, barely able to walk, barely able to breathe, and everything hurting. I wanted answers and I wanted them fast. Like the last post said we went to the ER and they found nothing. I will have to say that ER doctors that have not a lot of experience with cancer patients makes for a much long hospital stay. :-( Not a lot of fun. I was getting sick and not able to keep my fluids down and keep my meds down. I felt like I was at square one for the 20th time. Oh my battle, as many of you know with life, 2 steps forward, 1 step back and so forth. With all the things that I have had to deal with I still, today don't think I am in charge of my health and don't understand why everything keeps happening. It is hard on my body and on my mind. I am always determined to find out what is wrong until I feel well. Almost two weeks after I started with all the issues, we are close but don't have an answer to what is wrong with me. I am worry about my co-workers everyday and feel bad for missing a day. I feel like I am letting down so many people. If I could have gotten out of bed and went to work then I would have. I know that I am going to get to better each and everyday. I haven't lost my positive attitude. I am still thankful everyday to be alive. I think about all the people that have helped me over the past year everyday on my way to work or the clinic. With all that is going on it is the small things that matter to me most. The love that I get from Ross, his hugs, his kisses, the things talking about our future. I love it when it is sunny outside, the flowers are starting to bloom. A good meal at home with my family. Even going out to for a meal with the family and having a great conversation. A stranger smiling at you as you walk down the road. I hope to brighten your day with a smile and not a tear. I will end it with this...Time heals all wounds.

New Blogs from Jenene - Update from Today - February 22nd.

So we had an incident today where she was having severe back pain issues and contacted the OHSU Clinic and they told her to come to the Emergency Room. We went and waited while they drew blood, gave her an EKG (http://en.wikipedia.org/wiki/Electrocardiography) and then sent her for CT Scan (http://en.wikipedia.org/wiki/CT_Scan) to check to see uf she may have had a blood clot in her lungs, or pneumonia, or something that is causing her back pains. All the tests came back negative. They also had her take a Urine Analysis, and it came back with a slightly elevated white blood count.

She is supposed to take it easy tomorrow and then we will go to the Clinic on Friday to check with them (blood draw, labs, etc...).

She has been keeping up with her blog every few days. Please see it here: http://neeners-updates.blogspot.com/.

If you would like contact her, either text or call her, or visit her on her Facebook Page (https://www.facebook.com/jenene.philips) or email (jmphilips503@hotmail.com)

Thanks,

Ross Youngman

The 100 day mark.

Why is 100 days so important? For a cancer patient, it means that you get some freedom back and don't have to be watched 24 hours a day. My mom planned a great trip to the beach. My 100th day was September 8th. Charlene was going to fly in from Vegas and of course Ross and Scott were going to be going as well. While I was in the hospital I would get on the computer and look at things that we could do at the beach. I wrote everything down that I wanted to do. That was my new thing, writing and planning for the future since my memories were a bit fuzzy. The beach trip was wonderful because I was actually out of Portland. Ross and I still worried that something could happen. That feeling doesn't really go away. My family has been so kind and the beach trip was just what I needed. Now that I have made you feel all warm and fuzzy. Don't worry I didn't have any tramatic things happen in September. That doesn't mean that it was a walk in the park and that's the thing. I was barely able to walk and when I got out of the hospital around the the middle of August so when the 100 days came around it really wasn't my 100 days. I have been challenged every couple of months that has set me back. I keep pushing and pushing for a better me. I actually am challenged everyday with something by the body, mind and soul. For me the next couple of months went by without really any problems. I was really pushing to go back to work, but the doctor wouldn't let me. I am really thankful for the doctor that I have because he makes me really think about things and knows me better than I do myself.

3 days gone

Are you ready for the biggest thing that has happened to me? I remember lying on the couch, throwing up knowing that something was wrong with me. I called the clinic and I think I was a running a fever which meant that I needed to get to the hospital right away. I was in the clinic and my doctor came down from the hospital and told them to admit me. I was starting to feel better, and ask Ross if we could come back tomorrow. He told me no and thank god he did. The first night went well as well as it could for being sick. The next morning I remember telling the nurse that I had a migraine, she gave me some oxycodone and imtrex. I grabbed my head and was in my usual position with my head in a pillow with my legs directly underneath me. I know that Ross was in the room, but after that I don't remember anything that happened until I woke up only to find out that it was 3 days later. I was so confused. I was lying there and didn't know who the nurse was. I looked over to my left and I asked who it was. It was my sister, Charlene. I couldn't remember my own sister. My brain was telling me that I didn't know who she was. I don't know if anyone else has experienced that but what a feeling of confusion. The hospital and family would only tell me bits and pieces of what had happened. I will get to that in a bit. I was in the ICU and felt like I had to pee. Little did I know that I had a catheter in me. The nurse told me to just go but I didn't feel like I could go in the bed. Then a few seconds later they told me that I had gone. I wanted to see! Ross said no, but then the nurse picked up the bag and showed me. It made me a little happy. So there we all were down in ICU waiting for my room to become available. I couldn't understand what was taking so long. They told the room number, same as I had been in, so why couldn't we go up? It look me several months later to figure that question out, because 3 days had passed and they had moved all my stuff out. It just happened that I was going to be in the same room. Making me a bit more confused. I really wasn't to comprehensive what all they were telling me that had happened. When I was back up in my room Ross slowly told me what had happened. Most people know, but let me recap. I had a seizure right after Ross came back from dinner. Then I went into cardic arrest, he didn't tell me that part, the nurse that performed it on me told me. I started to bail my eyes out. I couldn't believe that I was that close to dying. The nurses had to ask Ross if he wanted me to ressitated. My parents thank him for being there for me. He really had to make some tough calls in a short amount of time. I am so thankful for him. It was so hard to take in, that not only did I have the one seizure, went into cardic arrest, then 2 seizures in ICU. I will tell you a little secret, the nurses give you meds to forget the trama things that have happened to you. It worked, I forgot a lot of things. After I came to, my chest hurt so bad from the chest being pounded on. I thought that they had broken my ribs, I even went and had an X-ray taken because of the pain. The ribs were broken but bruised. I was in pain for a week. Thank god for good meds. I waited a couple of days before I looked at myself in the mirror and when I did I started crying. There was scabs all over my face. You would think that the chemo, radition, and transplant would be the difficult. Hands down this was my hardest thing to go through. Here is a little fact: when you are in ICU you lose 30% of your muscle mass ever day. 3 days equals 90% of my muscle gone. As you may know, I am not very muscular and I could barely walk yet again. Holy cow, what was my body doing to me. I haven't even told you what the cause was, I was allergic to cyclosporine. I had been taking it for 78 days. This medication was trying to kill me. It almost did. You really think things over when you are that close to death. Ross and I have gotten a lot closer over the year. Like I said before he has been my rock. I couldn't imagine my life without him. Back to the bad, bad drug. I started taking it as soon as I got my transplant and continuing taking them and as time went on the dosage got smaller. I was on the lowest amount and it was still showing high counts. I guess while I was "sleeping" they ran a ton of tests on me. They thought it was going to GVHD again. Big surprise, I was rare again. That is most of what I remember from that terrible stay in August. The great news is that I have been recovering very well, slow but well.

July

I hope that as you are reading my blogs that you are able to get a better understanding of what I went through and am going through. My dream is that one day another cancer patient that has Leukemia will be able to read this and get a better understand on what is going to happen. With that being said. It is time for July!


Towards the end of July, I wasn't feeling well. I could barely take my medications and wasn't really eating. For me that is kind of a big deal, because I have been taking medications for a long time not just for the Leukemia but for other health issues. This was a huge red flag to me. We called the clinic and told me to get there as soon as possible. I got in and seen right away and was told that I was going to be admitted. Back into the hospital I went. I should really call it my other home, feels like I have spent more time there than anywhere else. Prior to my transplant I gained a bunch of weight in fear of something going wrong and me losing all the weight again, but I didn't until the July trip to the hospital. I was diagnosed with Acute Graft vs. Host Disease of the stomach and colon. I am not going to shy away from what I went through, so this is your warning. Here is what it means: "Graft-versus-host disease (GVHD) is a complication that can occur after a bone marrow/stem cell transplant in which the newly transplanted material attacks the transplant recipient's body." So to treat it was to suppress the immune response without damaging the new marrow. Medicines commonly used include methotrexate and cyclosporine, either alone or in combination. Well I was already on cyclosporine, they were big nasty pills and they smelled too. Yuck! Ross wouldn't even kiss me after I took them. I wouldn't either, they were nasty. So that hopefully gave you a better understanding of what GVHD. So I had it in the stomach and colon. It felt like someone was eating my insides. I wasn't allowed to eat anything and could only have something to drink when I took my medications. So you could see where my extra weight gain would be coming in handy. There were several nights were I would wake up having to go to poop and wouldn't even make it out of the bed. Or I would wake up and have already pooped myself. I went through a lot of clothes those first few days. Then they put me into diapers. I felt like I needed a binky. The diapers didn't really fit and continued to make a mess in my bed every few hours. Either my mom, my sister or Ross went and got me some pull ups. Finally something that fit and didn't make me feel like a baby. You really have to swallow your pride to have someone else clean your butt and legs off because you are too weak to do it for yourself. I didn't realize how hard it was going to be after the transplant. There are so many possible side effects from the transplant itself and the medications. I remember how aweful I felt from not being able to eat and losing everything that was inside of me. I felt like I was back to square one. I was going to have to rebuild my strength again. Never did I doubted myself and my abilities to beat any situation. I was after all named the Pink Warrior by the hospital staff. I was always there to entertain them since I was one of 30 patients and was probably the youngest. I had a pediatric Leukemia but got to hang out with the old people. I guess it's better than hanging out with the kids that would probably drive me nuts. So let me explain something about what I was diagnosed with. Acute Pediatric Lymphocytic Leukemia, which "normally" only is found in kids. Since I was 29 I was told old to be with the little kids and also did not get a doctor that is used to dealing with kids and this disease. Instead, I am over in the old folks home with doctors that aren't sure how to treat me. It has all been a guessing game. I learned to stop asking certain questions. If you know me, I have never been know as "normal" so why would I be surprised to come down with a disease that was rare.
When I was in the hospital I have to fallow a very strict diet and make sure I walked around the halls a certain amount of times. I was very weak and could barely get around. I couldn't believe that I would have to be fighting for my life again, luckily I went to the hospital before it got too bad. I think that was my third time of feeling like I got ran over by a train. Like I said before, I will stay positive and keep looking forward. On that note, don't forget that your life can end at any moment. I stay strong because I want to live!

June and possibly more

Well lets see. Where did I leave off. That's right I was getting out of the hospital. So my mom was there to pick me up and take me to my new home. Man, that was a lot of moving in one year. I still think about my place that I had on Woodstock and miss the comforts of my bedroom. It was my little room to get away from everything. I was really excited to be moving in with Ross. It would be the first time that we had lived together and now was the right time. Back to me leaving the hospital, as many of you may know that I am accident prone. I tend to run into things and always have bruises on my arms and legs. Well I was in the bathroom and I went to pick up a wash clothes off the floor and fell over and hit my head on the toilet. I knew that if I told the doctors that they would make me stay. I thought that I was strong enough to leave. Then we went to Nordstroms to get some make-up stuff and I was walking up the 3 stairs to go outside and my legs gave out from under me. Even with my mom's help I wasn't able to stand up. I had no idea what kind of muscle mass I had lost. In now in February I still have a hard time walking up stairs without getting winded. My lungs were damaged from the radiation and also some of the medications that I took. My platelets still haven't gone back to being in the normal range, again making it easier for me to bruise and also takes longer to heal and this is 6 months after I have gotten out of the hospital.
Once I was home, it took a long time for it to feel like home. I needed to put my womanly touch on things. Ross has been so kind and caring in working together to really make this our place, well with roommates. So from the day from your transplant to day 100 I had to have 24 hour care. Really! I had to have someone with me at all times. I quickly learned there wasn't going to be any "me" time. Jen, whom you haven't heard of yet, was kind enough to take care of me from the time that I got out until mid-October. I could only imagine not having a great support group like I have. So between Jen (full-time), Ross, Mom and Dad, I was covered on someone always being able to watch me. Again this goes back to having to depend on others and letting go of the control. Oh boy, that has been one of the hardest things for me to do. It was summer time and I wasn't allowed to be in direct sunlight from the mediciation that I was on. I couldn't go for walks, couldn't have live plants around, couldn't have any pets, couldn't do dishes (which I still can't), do laundry (only supposed to fold the clothes at this point), no standard house cleaning. I was back to using a different towel everyday. One thing that cancer has taught me is that it is no eco-friendly. You have to throw everything away and that really bothered me. If I could decribe what it is like, imagine that you have a newborn baby and that is how I felt. I was completely shut off from the world. There is one thing that most wouldn't know that people that get cancer inbetween the ages 15 to 39 there is no guidence for how life is going to be after treatment. Everyone just expects us to go back to normal. The doctors just send you on the way and only deal with you if a problem arises. They have no idea how your body is going to react to the treatments. It is all one big guessing game. I learned that very early on in the treatment. They just don't have the answers since every single case is different. I don't blame them. OHSU is coming out with some great groups but still I was already out of the hospital by the time anything had started or heard about anything. It would have been nice that first month that I was just sitting at home to make some connections durning that time. I get a little upset because I have felt more left out of things in the last year than ever in my life. I will get into that deeper later on. Not only does your body become weak from all the chemo, radiation, and medications but all from the mental workout that your body has to do. I told myself everyday that today is going to be a good day. I am happy to be alive. Energy and persistance conquer all things. I wrote notes to myself all the time to cheer myself up. To be mentally strong is almost harder than the physical stuff, putting them together has been a real delight (please note the sarcasm). July coming soon!

Transplant and TNT

A few days before I was diagnosed Ross got a piece of mail from Team in Training to do a marathon. We talked about since we both had lost someone to leukemia and thought that it would be a great idea if he did it. I didn't think that I would be strong enough to do a marathon. Boy, was I wrong. I think I went through a couple of marathons. Within a couple of days of me diagnosed Ross decided that he would do the Portland Marathon because if I could fight the battle, he would run for it.
A few days before I was going to go in for transplant Team and Training was having the kickoff party for the marathon. I was there as Ross' honored teammate, not really knowing what that really meant. I was very bald at this point so it was pretty obvious that I was a cancer patient. This lady walked up to me asking who I was and if I would be interested in talking. I thought that if I could be strong enough to battle cancer that I would be able to talk in front of a large crowd not really knowing what the size of the group would be. I have always had a fear of talking in front of people, so this was a big step. My mentality had changed and I looked forward to conquering my fears. I got up to speak and it was a very slow moving in my mind. I spoke from the heart and broke down right in front of everyone. The not knowing what was going to happen to me with the transplant was freaking me out. I never had a standing ovation before. It was a great feeling but so hard to get through. Now onto the transplant. The first day was really hectic. I got admitted, when and got my port put in that hurt like no ones business. They screwed up when they were putting it in. I am not sure what they did wrong but even with the medicition that they gave me I could still feel the pain. Then I was off to the radition department and that's where it got intresting. I was there to get fitted for lung blocks that were going to protect me from the radition. I just thought about this, maybe that is why it is so hard for me to breathe when I am going up a flight of stairs. I will get back to that later. They put you on a bicycle seat with this plexy glass around you and tell you to hold onto the railing. It isn't comfortable and I don't know how I am going to stand like this for 45 minutes to an hour. So I standing there getting prepared to be fitted and all the sudden I feel my world closing in around me. I said out load "I think that I am going to faint." Sure enough I did. Apparently, I wouldn't let go of the railings. When I did wake up I found this man standing very close to my face and he had been pounding on my chest to wake me up. In a very short time my poor chest had been through a lot and I only had been a there a couple of hours. This process wasn't starting off very well. The next couple of days I would do radition that wasn't as bad as I thought. I was really scared to do it, because I never heard anything good about radition. There were so many side effects that I am still not looking forward to. I had four days, twice a day for radition and getting chemo as well. It took a few days for the side effects to set in. The radition and chemo took it all out of me. The two treatments had killed my immune system and stem cells. I was at that point, my insides were all gone. On May 31st, I received the stem cells transplant. It wasn't as exciting as I thought. It was a bag of her stem cells that would go into my port, but it was the most important day of my life. I was going to live! :-) I decided on June 4th that I was going to get out on the 14th. Since every case is different they tell you that you are going to be hospitalized from four to eight weeks. I thought that was way too long and I was going to get out of there way before that. If you know me, I love to set timelines and goals for things to happen. I never doubted for a second that the transplant wouldn't take. I didn't know what my chances were for the transplant not taking. In a few months I would learn a very hard way that the transplants don't always take. There isn't much that I remember about the transplant stay. I am sure that I was on good medications. I am sure that I had good days and bad days. I could have keep a long but if I know myself, it probably wouldn't have made much sense. I do remember one day I was walking around the ward and this woman was in room with a patient. I am assuming that it was a mother and daughter and the daughter was the patient. The mother asked me how many days it had been since my transplant. I think that it was a couple of days after my transplant. Anyways, I told her and she turned to her daughter and said see she is out walking around. I wasn't sure what the conversation between them was about. So I went walking around the ward and stopped at the board that listed all of our names and how far we were out of transplant. The girl that I had talked to was about a week more than I was. I later found out that she hadn't even gotten out of her bed to go walking. In order for you to go home you need to walk, eat, poop and not be hooked up to meds. She was one of those people that were going to be there four to eight weeks. It made me strong and push harder to get home. Everything was a success! The transplant was only half the battle. June, July and August were harder than the four months before. You know what to look forward to on the next blog.

April and May

April really started for me on the 21st of March, when I got out of the hospital. While I was in the hospital my family had to move me out of my place because my best friend Jayme worked at a preschool and I couldn't risk getting sick. So instead of going back to the home I knew and my bed that I loved so much I was going to be living with my mom, stepdad and sister. I had never lived in Hillsboro before and didn't want to live all the way out there away from everyone but I didn't have any other choices. Don't get me wrong, it was a very nice set up. We each had our own room, I had all my tv shows and dvds, and Charlene and I shared a TV in the living room. At first I was really weak and could barely do anything on my own. You really have to swallow your pride when have to have a caregiver. There is nothing like giving up your independence. I couldn't bathe by myself and Charlene would have to cover up my PICC line everyday and help me get into the shower. I bet you didn't know that I had to change my sheets at least once a week and had to use a different towel everyday for the risk of catching something. I couldn't use a hand towel to dry off my hands, only paper towels, again risk of catching something. I wasn't allowed to make my own food. When I mean make my own food, I wasn't allowed to pour myself a bowl of cereal. I wasn't allowed to touch the boxes or cans that the food came in. Some many restrictions and yet I was happy to be alive and spending time with my family and Ross. The hardest part about being in Hillsboro was the lack of friends that came to see me. My closest friends would come and see me and I love them so much for all their support. It was lonely during the day when Charlene would go to the gym and run errands, but everyone lives their lives and I understand it was a long drive for most.
I went through another round of chemo in mid-April to make sure that the cancer was still in remission and to prepare the transplant. Then came all the tests. Who knew that there was so many tests that you have to do to make sure that your body is ready to go through a transplant. We even had to go to a class on how to live after the transplant, but again they still didn't teach me with the emotions that I was going to go through. It is all by the book and straight forward which I love, but it is such a small part of what you have to deal with. These were probably the two easiest months for me. There was a lot to do and keep me busy. I built my strength back up and felt like a normal person except without the hair. I had a great party 2 days before I went in for my transplant. I really love all my family and friends that have shown so much support throughout the last year. It is the small gatherings that I have that really make me smile. I have learned to not take for granted the small amount of time that I spend with anyone. I love to make people laugh and brighten their day. I try to write down 5 things each day that I am thankful for. It is amazing what small things that you really learn to appricate. Look at the small things and the big things because it the big things that can bring us the joy too. Next will be about the transplant and Team and Training.

Reflection on Febuary and March

I go through the paperwork that once was my life in a day by day breakdown of the medications, the food I ate, and keeping track on my in-take and out-take. I was diagnosed and had my first bone marrow biopsy the following day. I remember how much it hurt to have the biopsy. It was some of the worst pain that I had ever gone through. Little did I know that I would have some many done that I can get up and walk around normal after I have one now. It is amazing how the body handles pain once you know what you are getting yourself into. When you do something for the first time you have conquered your fear. You will never have that unknown again but then you know that you are stronger than you were before. So many people say that I am their inspiration. My thoughts now are to better this world and have people understand that life is so short and we take some many things for granted. There is so much else that I want to teach but it is if people are welling to listen and want to learn from my experience. I hope this blog will help others and myself. At the beginning of treatment I was placed onto 11 new medications, most of which were chemotherapy drugs to put me into remission. I had to make the choice on weather or not this was what I wanted to do. I could have gotten up and left the hospital and given myself a month or two to live. If there is one word that I have learned is determination. It is all a mind game, setting goals and believing in yourself. I want to live and have a life for the 50 years. People say that I am a survior but really I feel like I am warrior and I have to go to war with myself. I don't feel like a survior because I have so much more to go through. Survior feels like it is an end result to something. The insides of me are fighting each other making me weak even to this day. On 2.19.11 I had a PICC line places in my arm to recieve the medications in a strong vein. 2.20.11 the doctors had a CAT scan performed and everything came back normal. I don't remember this happening but it is documented that I had one. Almost every day that I was in the hospital, I had to recieve medication for a migraine. I was taking Imatrex and Oxycodone and it was barely working. I still don't know why I was getting the migraines but it was like clock work on when they would set in. I hated to have to ask for mediciation. I didn't realize at the time that I really needed to be in the best comfort as possible. They were always looking at the liver and kidneys making a little more fear in my life, but luckily nothing ever came of it. Only one week into it I was started on Flexerall for pain. The amount of pain that my whole body was going through doesn't compare to the side effects of the medications. Besides the chemo meds the pain meds have really blocked my memory of things that I have happened. Reading over the notes, there seem to be a lot of set backs that I don't remember. I had to get a lot of transfusions and my counts wouldn't go up and then they weren't able to preform the lumbar punctures and biopsy. On March 2nd it was documented that I weighed 116 pounds. That was down from the 127 that I started with. I was watching my life in front of me disappear. This cancer was trying to take me. I was fighting with all my heart and soul. It hurts my heart now to think about all the pain I went through. On March 4th around 1:20pm I was told that the chemo didn't work. Thank you Charlene for documenting it. I remember sitting on the bed and just losing it. I knew at that point it wasn't going to be a easy road. Good news is on March 7th we found out that Charlene was my match. Oh that felt good to have some good news. It is really hard to read over the notes from what my family took. It is pretty straight forward, no fluff which is how I like it. At this point I haven't even been the hospital for a month. But because I know how it turns out, I know that I get sent home on the 21st. Those next 10 days were about getting better, being in remission, and fighting for my life. Not eating because of the mouth sores were probably one of the worst experiences. They are like shutting down your mouth and vocal cords. Needless to say I lost more weight. By the end of the month I was down to 104 pounds. It was the most fragile state my body had ever been in. The next couple of weeks I spent in bed or in a chair watching tv. Next will come April and May. I hope that you will learn something from this journey from me. Please feel free to share your thoughts.

My sister

The day after I was diagnosed my sister was by my side. She left her life in Las Vegas to be with me. I am sure that she felt the same as me and had no choice in being there. From the moment that my mom called her to let her know, poor thing was driving when she found out till she left me in June. Those months were the best we have ever spent together. I couldn't have asked for a better sister and companion. I needed someone to be strong and be there for me. She met that and so much more. Spent several nights with me in the hospital. She had to see me at my worst. She had to change me out of my clothes several times because of the accidents that I would have while I was sleeping. She would help me take showers when I wasn't even strong enough to stand on my own. There is something to be said about unconditional love. It means that you will do ANYTHING for another person and put that person first in time of need. It was easy for me to have her help me. For all of our lives I was the big sister and had taken care of her and now she had to help me in so many ways. When the doctors decided that the best thing for my chances of living was a stem cell transplant we knew that she would be a match. I never doubted that she wasn't going to be a match. We thought it would be a simple test and she would just do it. Oh the things that the doctors don't tell you. It took a couple of weeks to find out that she was going to be a match and that was the best day of our lives. Then came all the testing for both of us. Luckily, we pretty much had the same diseases as kids so she wasn't putting me at risk for catching something else. Both of us showed that we had heart attacks, no really. They had to do several tests on our hearts to make sure that they were going to be strong enough for the transplant. They still can't explain why our hearts show that we have had heart attacks. One day, I can't remember what hospital stay it was the doctor told my sister in front of me that it wasn't going to be her fault if I died. I couldn't believe that the doctor would say something like that. It really hit me hard and I still think about that. Of course, it is true that if I were to die it wouldn't be her fault. While I was at home we would spend most of our time watching the Today show, soaps, and Ellen. I pretty much had something to watch every hour of every day. She would make me breakfast, lunch, and dinner. She would have to do all the cleaning because I wasn't allowed to. I am still not allowed to do very much cleaning. She would drive me to all my appointments and never complain about anything. We were living at my moms for a few months and it was a hard adjustment to make. Most of my friends didn't come and visit like they did in the hospital. It made me sad to be all alone. She kept my spirits high and dealt with my mood swings. When it finally came time to donation the stem cells, she was a trooper. She had it alot harder than I did. She had reactions to the medications. She had to have it taken out of her neck because her veins weren't going to be able to handle it. She was saving my life and I am forever greatful for it. I am so blessed to have a sister that has taken such good care of me and put me first for so many months. I hope that one day I can repay her. She also cut her hair short to make me feel better about me losing my hair. It was all these little things that made me feel better. Taking me to the store was huge. It was hard to be "locked up" for so long and not be able to go anywhere. I would reach for something on the shelves and she would slap my hands because I wasn't even supposed to touch the boxes. It was nice to be able to just get out of the hospital and house. Then I was hospitalized again in July and there she was back by my side. Ready to take care of me and help me though things again. Her attitude always was positive, but I guess that is how we were taught to deal with things. In order for things to go well you have to thing positive and believe that they will. Then I was hospitalized again in August, the worst stay of them all. I woke up and was confused at were I was and who was in the room. I remember looking over and see my sister but I didn't know who she was. I couldn't figure out who this woman was looking at me. Finally things started to make sense, kinda. I couldn't believe that I didn't know who my own sister was. In my mind still I remember waking up and still not knowing who she was. I will go into that hospital experience another time. I only wish that she had been there the whole time when I was going through cabin fever. She was the only one that I wanted around to take care of me. But I understood that she had a life and needed to get back to her husband and dogs. I couldn't believe how long she did it for. I have a hard time being away from Ross for a day. She is truely one of the strongest women I know. Then it came to celebrating my 100 days after transplant and we had a trip to the beach planned. I was so excited to get out of town and spend sometime with my family. It was so much fun! Having my sister there to experience everything is so important to me. In less than a month it will be a year since I was diagnosed and I am headed to Vegas to see her and her husband. She is truely the one that I want to spend my time with because without her I might not be alive. Then in May will be my one year since my transplant and we will all be headed to Sasquatch. Again she must be there for all my celebrations! I am so happy to wake up each day and be greatful for the life that I have. It is all the small things that happen to make me who I am. I am so thankful for my sister! I love you Charlene!

The next step

When the doctor told me that I had leukemia all I could think is that I have the same thing that Colin had? I didn't know that much about leukemia except for that it had taken a life that was so dear to me. From that moment I thought that I am going to fight this and not have the same outcome as Colin. I thought that I am not going to cause that kind of pain of loss to my family, boyfriend and friends. That was me, always worring about how others were going to be effected. The only thing that I could do is think about beating this very scary cancer. I didn't think or care about what the consequences were going to be by making my choices so quickly. I don't regret the choices that I made. I wanted the most direct plan to get me to remission. I immediately wanted to start treatment because I wanted to live my life as a normal woman again. I had no idea that I would still dealing with it a year later. Now I realize that I will never have a "normal life" I will always have to worry about getting GVHD. That there are life long effects from the medications and treatments. My body will never be "normal". I will go through things that most will never understand. I might have just turned 30 but have the body of an 80 year old. Tht getting a standard cold could hospitalize me. My liver, kidneys and lungs have to be monitored closely for the rest of my life. I will have special doctors and will always need insurance. One of the first things that they tell you is that you aren't going to be able to have kids, it was the furthest thing from my mind. I couldn't think about bringing a kid into the world when I don't know how my life is going to be. I can't even count how many times I was told that I won't be able to have kids. There was finally a point where I couldn't hear it anymore and just lost it. Losing the choice of being able to have kids was taken from me. When you lose the choice of being able to do something, it doesn't feel fair. I started the chemo right away and it seemed so easy and I thought this is nothing. Well, if the chemo doesn't work then why would there be side effects? When the doctor told me that the first round of chemo didn't work I was devestated. It is so hard to comprehend what they were telling me. Why wasn't the chemo working? I will never know. I had to wait a few days before they started another round of chemo and luckly that took. The side of effects were so bad. The mouth sores caused me not to eat. I remember asking the nurse if I was going to lose my hair and he said yes. Even though you hear what they are saying you don't want to believe what is going to happen. I was in the shower, just pulling out my hair and crying. You don't know something feels until it is happening to you. Your hair defines the way you look. I never had dealt with anyone losing their hair from chemo. I didn't want to look like a cancer patient. I wanted my life back, but I knew that I had a long road head of me. So I accepted what was happening. This was the truth and my life was no in my control. It was in the hands of the doctors and nurses and I had to trust them like I never trusted before. Ross said lets shave it and I was okay with that. I didn't like to lose my hair so getting rid of it all at once was going to be the easiest. Jake was kind enough then to bic my hair and you know what? my attitude changed. I looked good as a bald woman. I was a warrior! That's what the nurses called me, The Pink Warrior! To have my room all done in pink added character to the dull room. I thought every day that I needed to stay strong and let the medication do what it needs to do and I will beat this. I have thought many times of Benjamin Franklin whom I have looked up to for many years. The quote that I have made my motto is "Energy and Persistance conquer all things". It was me to the fullest. I have always put my 100% into everything that I do. The other man that helped me and felt like was always there was my Grandpa Hester. I want to the strong woman that my grandpa would be proud of. I want him to be able to look down and think that I am doing right by him. Several times I was "lucky" that I was at the right place at the right time. I am always listening to my inner self. I felt his presence the whole time that I was in the hospital. Even though I was in the hospital fighting for my life I was still dealing with life. Your bills don't get to be placed on hold while you are in the hospital. I had an amazing support team. My mom and stepdad really steppped up to the plate and helped me keep my credit good. I had been working so hard to get it to be good. I thought that I was going to lose everything. I thought that I was going to have to file bankrupt. All these added stresses are what you want to deal with but it is apart of life. I learned very quickly to take notes because life was going by too fast. Also learning about the cancer that I had and my odds. I remember that the doctor told me what they were but told me that I needed to think that it was 100% chance of living. One thing that I learned very quickly was to think positive. I couldn't think about why this awful cancer had chosen me. That came later when I was stuck at home with too much free time on my hands. I don't really remember that much from the 32 days that I was there. Oh them chemo brain that I am forever going to have. I do remember all the friends that came to see me. I never went a day without seeing someone. Ross was there everyday except one. He is my rock! He really stepped up to the plate and I will always be thankful. My family, mom, dad, sister and step dad were amazing too. I will get to them another day. Like I said before Feb. 18th my life and relationships changed forever. When I went into the hospital I weighed 127 pounds when I left I was 104. I was a cancer patient. Next blog will be about my sister and her role.

Almost 30

I have decided that I am going to start blogging on a regular basis. I want to share my first year in my 30th with everyone. But first I must go back and share the past year. This time last year wasn't all that great for me. It all started with the Ducks losing, then the Saints and the Patriots. I know that it seems small but I was feeling like my luck had run out. I was the person that you went shopping with so that we could have a close parking spot. But for some reason I felt like my life wasn't going that well. My relationship was on the rocks and headed for failure. I was getting these bruises on my legs and arms. I wasn't too concerned because I have always bruised easily. Finally, my co-workers told me to call my doctor and then doctor told me that I needed to go to ER. At this point in my life I was just recently diagnosed with anxiety and hoping that the pain in my neck and back would go away soon. Little did I know what was going to happen to me. For my 29th birthday I wanted to do two things, get a tattoo and get my ears pierced. The tattoo went fine but when I got my ear pierced they wouldn't stop bleeding. At the time I wasn't sure why, but what was happening was my blood wasn't clotting. There were all these signs that you don't realize until way after something has happened. So back to where I was. I was at Good Sam in the ER but it wasn't the regular ER it was like a doctors office. I don't think that they realized what was going to take place for the 4 hours. I thought it was going to be nothing. Then all the doctors kept coming in. There was my mom, Ross, Jayme, nurses and doctors all in one room. They said that they are going to admit me. I didn't think anything of it until they took me up to the cancer floor. Like really? Are you serious, you aren't going to tell me anything but you are going to put me on the cancer floor. They had a specialist come in to tell me that I have acute lymphocytic leukemia and that I need to go to OHSU. Just like that my life changed forever. Most of the story you already know but from Ross' perspective. So I will start my journey by blogging. All my feelings for everyone to see.