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!