Wednesday, February 22, 2012

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 ( and then sent her for 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:

If you would like contact her, either text or call her, or visit her on her Facebook Page ( or email (


Ross Youngman

Tuesday, February 21, 2012

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.

Wednesday, February 15, 2012

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.

Wednesday, February 8, 2012


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!