Hodgkins Lymphoma Awareness

Seriously am I being taped? Is this a reality show?  This all has to be a joke, right? I have been fighting for my life for the past 4 1/2 years.  It is the hardest job I have ever had. It is 24/7 with no special breaks in between.  I am beyond exhausted. My body is so tired. It takes all I have to get up and out of bed. My sleeping is still not good. I'm awake most of the night, coughing or tossing and turning or simply just sitting staring into  the darkness.  I often get out of bed after noon and lately it's been 1/2 pm.  I just feel like I need to keep sleeping.  It hasn't only worn me out. It has worn my family out.  I can't imagine being on the other side. If it were my mother, father or sister I would be so devastated to not be able to help or make it go away and to watch them suffer would be too much to handle.  My mother is my caregiver, which takes the brunt of everything. She quit her job in 2006 after my first transplant to help take care of me. Over the years my health has declined to the point of me needing her for most everything.  It has taken its toll on her as she hasn't had any breaks either.  My dad works two jobs to support our family and often works six days a week and sometimes seven.  My sister tries to make it to all my appointments, but it is hard now with Jackson.  We don't want to jeopardize his health with all the illnesses being spread around now.  It frustrates Shelley because she wishes she could do more for me, as she suffers herself every day with fibromyalgia.

Since my last update I have been to numerous doctor appointments.I got the results back from my xray mammogram and the MRI mammogram. The xray looked fine, however I got a call stating the MRI showed a mass in my right breast.  I had to go in for an ultrasound. Of course I was worried. Plus my appointment was scheduled for almost two weeks later. The doctor came in and spoke with me.  He said I had a dense mass in the upper quadrant of my breast.  He said looking at all my xrays, cat scans, pet scans they all seemed to correlate. So he wasn't going to do a biopsy. He wants me back in six  months for another MRI mammogram.  It doesn't appear to be malignant, but there is a possibility that it could be. So we have to watch it.

I had my toenails removed and hoping my wart is gone too. I was all bandaged up and in extreme pain, but I was a trooper and went to pulmonary rehab with my slippers!  Everyone was proud of me, including me.

I finally got to catch up with my good friend Tasha. We hadn't seen each other for a few months. We went to dinner nearby and had a nice time.  I haven't been out in public anywhere else except pulmonary rehab, doctors and dinner so there was no way I could get sick right?  Wrong. Last Tuesday I got a sore throat and came down with a cold.  Well I don't have an immune system so my body can't fight well. Naturally it spreads to the weakest part of your body.  That for me is my lungs. Ugg. I've got bronchitis again. I had it last year this same time.  So I've already had a pack of antibiotics but I had a chest xray yesterday at my oncologist's office.  Thank God I don't have pneumonia.  I am coughing so much though on top of my chronic cough that my body is just so  sore and tired.  I just pray it goes away and doesn't turn into pneumonia.

Time marches on, but I still sit here and wait.  I just got my appointment scheduled with my oncologist and pulmonary doctor in Boston at Dana Farber Cancer Institute. I haven't been there since April 2008!! That is because I was put into hospice.  It will be emotional when we see each other because we both believed I would pass soon.  It is a miracle.  I'm just wondering if I can receive the real miracle now.  It will be the first discussion about a lung transplant.

I have always been open and honest will all of my journals. I have never made anything up or sugar-coated it to make it sound good.  I know I don't have to share anything or everything, but I know how much it has helped so many people.  So this is me just being honest.  I am not happy with my life right now. It doesn't mean I'm giving up.  I just don't know how much more my body can take.  It has been through the ringer time and time again. I'm not getting younger and many of the ailments I have are very serious.  I know I will never have a healthy life again, but all I want is to be able to breathe again and to walk and ride my bicycle and do the things I want to do before I do pass away. That's all I ask of you Lord. Even if it were for one day of feeling great, I would take it.  I am very blessed for my family. I ask  you all for prayers for them to find the strength to keep going. This is so difficult.  I would not wish this upon anyone. If you and your family are healthy you should count your blessings. My family is tired and we need prayers now more than ever.

*****************************************************************************************

On a better note, my friend Sammi got through her bone marrow transplant. It was a bumpy ride, but she is recovering and should be discharged from the hospital soon.  She is a true fighter and simply amazes me. Thank you for the prayers.http://www.caringbridge.org/visit/byesiblings

Love to All,

Jennifer

Time can be kind and time can be cruel when we least expect it. When we're little we don't have a true perception of time. A week can seem like a month, while waiting for your next birthday seems like forever. Christmas was always my favorite holiday. The anticipation of Santa Clause coming down the chimney and trying to fall asleep with my sister in my room, has given me many wonderful memories. We would giggle and giggle until Mom and Dad would tell us that Santa wasn't going to come if we didn't fall asleep. The sun would start to rise and Shelley and I would start giggling again. We'd stagger out to the living room and the tree was always surrounded by tons of gifts. It seemed like Christmas day lasted forever and ever; opening gifts, eating a big breakfast, and playing with our new toys. Even a nap would be thrown into the day, with sliding, eating a big dinner and then watching Christmas movies. Oh and Christmas vacation, it felt like we had amonth off from school! No worries, no stress, just pure joy and innocence.

Now here I am, recently turned 30. To see it written down, to say I'm 30 years old just feels so strange. As I've said before, I still want to say I'm 25, since that was when I was diagnosed with cancer. No, I didn't stop living, but I put my life on hold. I figured it would take around 6 months of chemotherapy and a few tests here and there and I could just jump back into my old life. That didn't happen and it never will. I don't want that old life back, but I want a good life. To start with my treatments for cancer were to cure it and help prolong my life. Unfortunately, it just couldn't get rid of the stubborn tumors, which lead to more treatments and more side effects. Now, I am truly fighting for my life with lung disease from the donor stem cell transplant. No cure, no medicines, no therapies will change my lungs. My lungs are barely functioning. I have been meeting with my pulmonologist and he had me do pulmonary function tests (pft). If you have been following my journals, I had many of these in the past at Dana Farber in Boston. I hadn't had them since the beginning of 2008. Of course the results were worse than the last. I also had to do a "6 minute walk test." I couldn't complete the entire test. The technician kept the oximeter on my finger and another technician pushed along my oxygen tank. The results were that as I walk (remind you, I am inactive) that my oxygen saturation drops dramatically and in order to keep my oxygen sats high 80s low 90s, I need 8 liters of oxygen. In layman's terms;I shouldn't be walking more than 100 feet without oxygen on at least 6 liters. That's a lot. Primarily it's because those little tubes(bronchioles) that are attached to the lungs are inflamed so much there is barely enough room for air to come in and be blown back out(CO2). So my lungs have actually grown because I have so much CO2 that has gotten trapped over time. Again, my pulmonologist talked about the possibility of a lung transplant. It is still only talking. I have no education about it. I only know that it's not a guarantee and it doesn't give me 100% that it will work. Still only 2 clinics in the country that MAY be willing to take me 3 years after my stem cell transplant which is November 2009. I would have to have many tests and see if I'm "healthy" enough to travel, etc. One thing that we didn't know was that if we did go to Cleaveland or Pittsburgh Clinic we would have to move there for up to 1 year. There is so much to think about. It's a hard and difficult situation. A decision that can't be taken lightly. Again time, we're always rushing looking at the clock, hoping we'll make it to the next event on time and not be late. If only I had gotten up 15 minutes earlier. I wish this moment would last forever. Time doesn't stop for anyone or anything, it keeps on going, ticking away. Quantity or quality? Why not both? I want both. My prognosis basically is very grim, but I try not to focus on that. I have no idea what a lung transplant would give me. Based on those stats it shows the most an extra 5 years. Basically it's damned if I do and damned if I don't. Some may hang close to statistics while others don't believe in them at all. I have always stayed in the middle. Only one person knows when our time will be, but I do have mortality staring me in the face often. For some reason I am still here. I had still been receiving physical therapy at home and was doing quite well with that. However, I had plateaued and started feeling more weak again and wasn't able to keep going at the pace I had established. My visiting nurse was still coming to the house as well. Since I am on several medications (around 30) my intestinal tract is a part of my body that is affected severely. My nurse had to help me along with uncomfortable treatments to help with my severe constipation. I was close to having to be admitted to the hospital. I have to be on a strict regimen of taking laxatives. With all that being said, my pulmonologist suggested I start CardioPulmonary Rehabilitation last week. This will NOT help my lungs, but hopefully help strengthen my weak body. I'm amazing myself already. It's twice a week for 10 weeks and each class is 1 ½hours each. So 30 hours of my time will be spent positively trying to help my precious body. This is time well spent. It's actually something I would love to have more of, but realize that too much will just exhaust me. I go really slow and am monitored with the oximeter and BP by the technicians. I have worked on the recumbent pedal pusher and my longest time was 4 minutes and 30 seconds. It's at my speed which is slow, but after barely moving for two years it's awesome. I then proceed to the next station and work on my upper body strength. The machines in this gym are very advanced. Before I was diagnosed I never worked out. I was the lucky one that could eat what I wanted and just stay naturally thin. So this is REALLY a workout for me. I think it's a great thing though. It motivates me to get up earlier in the day, get dressed and be able to get out of the house and do something with my body that I didn't think I'd ever be able to do again. Plus, I've met some nice people. Yes, I'm the youngest, but that's usually how it is. Age doesn't matter when it comes to illness either. The members in my class are early to late 70s and they primarily don't need oxygen to walk around but use it when they exercise and you should see them on the machines!! My jaw dropped the other day watching an older gentleman. Wow! So the class is very positive and time well spent. I don't watch the clock and actually wanted it to last longer the other day. I feel kind of "normal" when I'm there. But at the end when everyone walks out and goes to their car I am waiting in my wheelchair for my Mom to pick me up. That's when reality strikes back. Back home, back tothe couch.

I did meet with the dietician there. Her first look at me, she asked if I was anemic. I said, I might be. I was anemic before I was diagnosed and through treatments had anemia. She said I was very pasty white. My Mom said she was really white as well. The dietician claimed that I didn't have any color to me. Also, she reviewed my eating habits. (Ha!) Since my tastebuds are completely different after all the treatments I've had, not much appeals to me. I like either sweet, sweet, sweet, or salty,salty, salty. I hardly ever eat lunch. My weight is fine, and she said I could eat whatever I want because I do need more calories.This got me to thinking more about my iron levels. I have been so fatigued, dizzy and just wiped out.

I met with my oncologist and as usual was getting my CBC (complete blood count.) I asked my nurse if that included checking my iron and she said no. I thought it would automatically check that. So they added that to the test for me. Blood work came back that I am extremely iron deficient anemic. On the ferritin (iron) scale: 6.0-115.0 is the range, 6.0 is the lowest. Mine is 10.5. My nurse couldn't believe how low I am. So I started Venofer IV (Iron Sucrose.) I started this last week at the cancer center. The IV lasts one hour and about a half hour to find my vein and get me hooked up. I will have these IV's every week for a month. I also got the results of my bone density scan. We were not very surprised to find that I have osteoporosis of my hips and osteopenia of my spine. This is primarily caused by the steroids (prednisone) that I have been on for a few years. Prolonged use of steroids takesa toll on ones body in many ways. Also, being inactive can attribute to this. Osteoporosis is a common disease that weakens bones. As it does, your risk of sudden and unexpected fractures goes up.Osteopenia is the forerunner of osteoporosis. It is a silent but destructive condition that robs bones during a woman's -- even a young woman's -- most productive time. No matter what your age or sex, osteoporosis and osteopenia can affect you. Your bones might seem sturdy now. You may be very active and doing the things you want to do. But osteoporosis and osteopenia are quiet, accomplished thieves. In fact, there are usually no visible signs. You may notice a loss of height or a Dowager's hump over time. But chances are good the first sign that you have one of these conditions will be a painful fracture. The bone loss with osteoporosis occurs over many years and is severe. It's so severe that the normal stress on bones from sitting, standing, coughing, or even hugging a loved one can result in painful fractures and immobility. Then, after the first fracture, you are at risk for more fractures. These future fractures may cause you to live with daily chronic pain. They can cause you disability. They may rob you of your independence.

For my situation, my oncologist recommended I receive Reclast IV (intravenously) for my osteoporosis. Reclast IV is used to treat bone loss (osteoporosis) in men and in women after menopause. It may also be used to treat or prevent osteoporosis in people who are taking corticosteroid medications(such as prednisone) for long periods. It works by slowing the breakdown of bone and keeping bones strong. It also helps to reduce the risk of broken bones (fractures). This medication belongs to a class of drugs known as bisphosphonates. I will receive this medicine once a year.

I don't want to be pessimistic or fail myself. I have come a long, long way. I'm not giving up. My body is extremely weak, but look at me! Hello? I have joined a pulmonary rehab. Who can say that after going through all the treatments,transplants, clinical trials and being admitted into hospice? Yet, I have seen a few of my online Hodgkin friends pass. I lost a couple weeks ago, Adrienne. She is on my page under the Many Faces ofHodgkins. Please send along prayers to her mother Allison. I know it's not my fault but guilt presses through and I feel like I've been punched in the stomach. Why Adrienne? Why not me? Why anyone? Why isn't there a cure?! I keep meeting more and more people on my webpage. It doesn't go away, I'm afraid it never will. The time just keeps going and all we hear is that we're so close to a cure. How many more years, decades do we have to hear that?

Alright,I let out a little steam. Remember I am a woman of stories, I try not to disappoint. About two months ago I noticed my big toe on my left foot was sore. I figured it might have been an ingrown toe nail. Ever since I had my two transplants, I lost all fingernails and toenails, I've had numerous ingrowns. I have been able to just cut the nail and pull it out. A couple weeks ago, I noticed this was a different case. It remained sore and became an angry red and the more I tried to get the ingrown out, the worse it became. Then I noticed that my big toe on the right foot started to feel sore. I thought no way. I cautiously cut the nail and pulled it out. A few days later I had two bright red toes, peeling skin,oozing pus and blood rushing out. I know, nasty. I've never had anything like it. Plus, I am prone to getting plantar warts. Well,for over 1 ½ years I've had one on the bottom of my little toe on the right foot. Two Monday's ago, my Mom called my oncologist and told them my toes were very bad. I had to rush over to the cancer center for a possible antibiotic IV. I got there and one look at them a call was being made to the podiatrist to get me in ASAP. I started a heavy dose of oral antibiotics. The next day my Mom, and my sore toes and I arrived at the foot doctor. I was afraid of having my toes cut off! Let me tell you, I have been through many,many painful things in my life, but the most painful is ingrown toenails and UTI's (urinary tract infections.) At first he started to cut the nail and I let him a couple times and then I spoke up and said I need some lidocaine. It's funny because in the beginning of my illness I would just take the pain and not say anything. Now I want whatever will take away as much pain as possible. I don't want to suffer anymore than I have to. The lidocaine shots aren't pleasant either. You should have seen how far in my nails had grown into the skin. He couldn't believe I was walking around like this for so long. It was a mess. I said my feet are nasty now. I was all bandaged up. I will be going tomorrow, Monday to see the podiatrist.This time he will surgically remove that part of the nail. Yes, it will be pulled out by the roots!! I am just hoping for more than lidocaine.

Wow, this is the longest journal entry I have ever done. I guess I should write little blurbs and save them as things happen. It's taken me a long time to put this together.So, I hope I don't bore you all. Yes, there is more. Last week I also had an MRI mammogram and a regular mammogram (x-ray). Usually women don't have their mammograms until they are 50 years old. Some at 40 years old if breast cancer runs in the family. I had one because I had radiation therapy to my chest and my grandmother on my Mom's side had breast cancer, and I have cancer. So my chances are much greater. It was really hard on me because my body is so weak and fragile. The nurses were so good to me. I had to be propped up on a tiny bed on my belly and rest my head on a donut, like when you get a massage. It took a while for me to catch my breath. Very uncomfortable because I don't have any meat on my ribs. I did it though.

Throughout all of this, there is a beam of light that brings joy to myself and family. That little light is Jackson! Over Labor Day weekend Jack was baptized and I became his Godmother. I am so honored. The Minister knows our family and understands my situation. So when we had to stand for the baptism, I could have stayed sitting, but I stood while holding onto the pew. I was really shaky, but everyone was ready to catch me. I wasn't going to miss this for the world. Jack did so well, he smiled the whole time. When the Minister walked him down the aisle to show the congregation he took the Minister's finger and started sucking on it. He was cutting two teeth! It was so cute. After the service, we all went back to Shelley and John's house for a backyard picnic. John's whole side of the family was there and it was a beautiful sunny day. I hadn't sat outside and enjoyed myself since 2005!! The sun just doesn't agree with me anymore. After all the chemotherapies, radiation and such I burn to a crisp. I actually did feel a little "normal" talking with others. My Dad helped me get around the yard in my wheelchair. It was a perfect day.

Jackson is 7months old already! He is growing super fast and is almost ready to start crawling. He just had his checkup and is 20 pounds and he's off the charts lengthwise,and is as tall as a 12-month-old! He has four teeth coming in. He likes to hold things with his toes like a monkey. This is funny because Shelley and I can pick up things with our toes. It must run in the family.

One day at a time still. That's how we all should live. Yes, we only have 24 hours in one day, so why do so many try to squeeze more time into the day? I remember what Dr. Mullally told me from Dana Farber when I started getting short of breath. She said, "Go slow, go slow." Every time I am up on my feet, I hear her voice telling me to go slow. This helps with listening to my breathing and not getting over worked.

A special request for a very special girl, Sammi. I have been talking online with Sammi's Mom, LeeAnne for a few years now. We have become very close and email at least once a week. LeeAnne has 4 children with her husband. All of the children suffer from some type of ailment. Sammi has an autoimmunedisease which has been extremely rough on her body. She will behaving a bone marrow transplant, like I had to try to give Sammi a better life. I am asking everyone if they can think good thoughts for the family and for Sammi as she starts the journey of her transplant. She does have a Caring Bridge site:http://www.caringbridge.org/visit/byesiblings

I have been writing this update for the past couple of weeks and so it is recent now. I hope that what I've written makes sense!

Again thank you for following me and holding my family and I in your prayers.

God Bless & Good Health,

Jennifer

I forgot to mention that in lieu of birthday gifts for my 30th birthday, I asked others to kindly donate $30 or whatever they could to the Alese Coco foundation, Fight2Win.  As I have mentioned many times, Alese Coco has been my greatest inspiration.

I posted the cause on Facebook.  My wonderful friends donated to this cause for raising awareness and fund research grants for Hodgkin's disease.  I was overwhelmed with the response. I had over $500 donated!!! What a wonderful birthday gift.  Thank you everyone that helped to make my 30th special in honoring a great young woman with a wonderful cause.

FIGHT2WIN

Cool, warm and clammy are common among my days entering into summer of 2009.  A summer that really wasn't expected for me to be here. Remember, when I hear the word, "future" I cringe? It makes me anxious and sick to my stomach.  'Jen, go ahead and make plans with your friends.' Much easier said than done. I celebrated my 30th, yes 30th birthday on the 16th. I had been asked what I wanted to do but again I am terrible at making decisions especially when it's future related. So, I had a very quiet nice day.  Shelley, John and the kids came over and visited for a little while. Anna picked me up and we went out to dinner. Tasha, her sister, and Anna's best friend met us there.  I lived right there in that moment. I was with girlfriends, sitting at a table amongst the public, eating and drinking and happy.  Of course when I would try to speak a little louder or laugh, the breathing would worsen and along would come the unrelenting cough. Back to reality. It sucks me in like a big black hole, never letting me fully enjoy at least 10 minutes of time.  I scan around the restaurant and see couples and families looking so happy.  I look at each friend at my table and realize they are here for me and how lucky I am to have them. I then think that if I wasn't sick that I wouldn't be sitting at the table, I would be out dancing and living it up. Each friend at my table is an amazing woman. I am not just saying that either. Truly genuine people. I was toasted by them and Tasha's sister Jess, gave me a wonderful toast. She made me cry. We're all praying that my 30's are better than my 20's. It still sounds weird to say I'm 30 years old. I feel like I'm stuck at 25 when I was diagnosed with cancer. Life just seemed to stop but everyone else's went on.  I know mine has gone on, but not in the direction I ever imagined or would wish upon my worst enemy.

Maybe some of you are wondering why I haven't written in a while. I'm not really sure. Each day passes and then another and another and another one. Monotony. It's not my fault, or my parents fault or anyone's fault. It's the illness that makes it this way. A vicious cycle. My nurse drew a diagram that really made me see what I'm going through. I broke down crying. The center of my problem is fatigue and shortness of breath due to poor lung compliance which has led me to be deconditioned which leads to poor appetite which leads to insomnia which leads to depression and it just keeps going around and around and around. So I am at the lowest of my lows. I will not hide that. I never had a chance to “feel” or express anger or sadness with all that has happened these past four years.

• Back to back treatments
• Trying to save a marriage/counseling
• Being immunosuppressed and unable to be in public for over 2 years
• Two bone marrow transplants
• Moving out of my house into a rental and then moving back home with my parents
• Having to give up my beautiful pet
• Clinical trial after clinical trial
• Commuting back and forth to Boston every single week
• Oxygen 24/7
• Wheelchairs
• Relying on others for most everything
• Giving up my car/driving
• Being placed into hospice (basically being told I have 6 months to 1 year to live
• Divorce/betrayal
• “Flunking” out of hospice because I didn't die
• Physical therapy
• Social worker
• Occupational therapy
• Possibility of a lung transplant in the...FUTURE
• Pulmonologists

It's time to get out of this slump. The hardest part is finding the strength. With everything I have been through, strength always seemed to find it's way through. Now that I have end stage lung disease this isn't so easy. When you can't get air in and out it is the most scariest thing I have ever experienced. You can't move and you try so hard to focus on getting air in and when it doesn't come those seconds seem like eternity and millions of thoughts roll through my mind. I don't want to die this way. I do not want to suffer. That exactly what it is when you can't breathe, suffering. Looking at my list above,you've probably noticed some new things. I have started physical therapy. I've been doing that for the past couple of months. Heather comes to the house twice a week. When we first started I could barely lift a leg because they would shake so much. Now I'm doing squats and little bits of Yoga! Heather has been wonderful. It has been hard not just physically but mentally to put my mind to strengthening my body when just the beginning of the year I was still in hospice waiting to die. Now I'm being told to strengthen my body. Again another turning point of my life. I'm happy to have “flunked”hospice, we all are. It's like what's next? I feel like that's what I've been asking for the past few years. Just waiting for some kind of answer and to go with it and have it be done. Then again, no one gets the answer to how their life is going turn out or what they should do to make it “right.” I've been praying a lot and asking Jesus to help me please, that I've had enough. I know He doesn't give you more than you can handle, so I'm trying to let him know that I can't handle anymore. No more sickness. I need some good things. If there could just be some kind of alleviation for my breathing, I would be so grateful.

I have started to see an oncology social worker at the cancer center. Therapy is always good for everyone. It's one thing to talk to your family or friends, but when there is someone that is neutral it makes it easier to get all of those bottled up feelings out. The funny thing is I have so much that I could talk about that I really didn't talk about anything the other day. Sometimes it's just easier to talk about anything besides my illness. So I chose to speak about my nephews. Alden, who just turned 16 and of course my little Jackson. They make me happy and happy is good for the mind, body and soul. One thing in common with my physical therapist, my nurse, and social worker is that I need to set goals. Goals mean future and future equals scary. I know it sounds silly, but seriously it gives me anxiety. I was given a homework assignment from each and all was to set goals. I've been bad because I haven't even set one! I mean they don't have to be huge or anything, I guess it's just the thought of it. For example; a short-term goal would be walking out to the kitchen each day. A long-term goal would be preparing myself breakfast in the kitchen. My OT said she can teach me ways to conserve my energy while being able to do things I didn't think I'd be able to. Like cooking in the kitchen, I would need a stool to sit. I could chop veggies. She would keep me monitored with a pulse oximeter to make sure my oxygen levels were good. It's all about conserving my energy while putting it towards the things I want to do. With PT most exercises are while sitting but the ones that are standing are with me holding onto something for support. It does feel good to gain some strength back. I can't believe how much I had lost just being on the couch like that. The body is truly amazing. My body is my temple and I am blessed for this body as it has brought me through many things that others could not have.

Alright, on that list is something really big, that you're all waiting on the edge of your seats to hear. I've been seeing my oncologist here in Maine on a regular basis now. I have my visiting nurse that comes to the house once a week as well. A little over a month ago on one of my visits with Dr. Hedlund she said that she has been communicating with my oncologist from Dana Farber in Boston, Dr. Ho. Dr. Ho has been speaking with the pulmonologist I had seen at Brigham & Women's Hospital last year. They have found two centers in the country that may be willing to do a lung transplant for me. The usual restrictions for having a lung transplant is that you have to be disease free for five years. These centers are willing to go 3 years post transplant. My donor transplant was November 2006. One of the centers is in Pittsburgh and the other is in Cleveland. Of course I would have to take many tests to restage my Lymphoma and see if I am well enough to travel. I would then have to see the doctors there and they would decide if I am a candidate. Quite a lot to think about, again in the future. My mind goes there and thinks, wow imagine being able to breathe normally again and to walk and talk and just be. I would be so blessed and I think once I hit the pavement I wouldn't stop walking until I wore the soles off of my shoes! Then my mind goes to the other side. The surgery itself, the medications,the healing time and possibility of death. So I don't go there. I live for today and hope for tomorrow. There's always got to be a little bit of hope. Or as my social worker says, carrots dangling in front of you. Something to entice you so you don't just sit on the couch every day and exist. Anyone can exist, but you have to strive to live. Maybe turning 30 is a good thing. A new chapter in my life. A time for change. Positive change. Time to meet new people, people that can relate to me. I need to socialize more. I need those scary future goals. I have to get up every day and do something. Anyone have any crafty ideas that I could work on with my occupational therapist? Hey maybe I'll find out a talent that I never knew I had. You never know.

That's where I'm at. I haven't left any of you. Sometimes it's nice to just take a break and not have to think. Or maybe my little break was about thinking. Whatever it was, I love my family more than ever.

Love & Prayers Always,

Jennifer

Not too much has happened since I've been home from the hospital.  Not much sleep either.  My favorite medication of all time, Prednisone has attributed to this.  Since I had a flare up of my GVHD, the steroids were raised yet again.  Steroids can cause difficulty sleeping; feeling of a whirling motion; increased appetite; increased sweating; indigestion; mood changes; nervousness.  Fun times. Of course I get all of this times 10.  So, I go to bed at 11pm and I'm wide awake until 3/4am. I finally get into a good sleep around 7am and I'll sleep until 2/3pm.  Then I get up and have breakfast and do it all over again.  I have felt absolutely miserable from this.  Not getting enough of sleep makes one feel sick anyway.

I did visit my oncologist last week and she is weaning me down on the steroids.  Slowly, not fast enough for me.  I've been resting most every day.  I've spent most time in my bed in pajamas. I can't stand doing this because it makes me feel like I'm "wasting" my time.  But I have to listen to my body.  Little exertion takes a lot out of me and takes me extra time to recuperate. 

I now have visiting nurse services coming to the home. I met my new nurse last week. She will be coming once a week. I met the social worker yesterday and I will have a physical therapist come tomorrow.  I am eager to see what the physical therapist will have for me.  I haven't really even walked in almost two years!!  I've lost most of my muscle and am quite weak when I'm on my feet.  If she can help me build just a little bit of strength back, I will be very happy.

At my visit, it was also decided I have a cat scan.  I haven't had one since January 2008.  I've wondered what the scan would show, but also realize there's nothing that can be done at this time if there were tumors.  I'll have the scan at the end of this month.

OK, I know you're all waiting to hear about baby news!  Jackson and his parents are doing good.  I got to spend a weekend with them all.  Oh the joys of being a new parent! Mommy hasn't slept very much since this little guy has been in the world.  Constant feedings and wanting Mommy.  I have fallen so deeply in love.  I love being an Auntie.  I never imagined loving someone so much before.  Of course he is the most beautiful baby I've ever seen!  He's already three weeks old and growing fast.  I am so blessed to have such a beautiful nephew.

Well, that's about all that's going on in my life.  Still one day at a time. Each day is a miracle. Technically speaking I shouldn't be here, but I am.  I'm here for a reason.  So I try to live my life to the fullest each day. Some days are a lot harder than others.  It's about trying to find the balance. 

If you watch TV or listen to the radio, most likely you've heard of the vaccine called Gardasil®. It is the only cervical cancer vaccine that helps protect against 4 types of human pappilomavirus (HPV): 2 types that cause 70% of cervical cancer cases, and two more types that cause 90% of genital warts cases. Gardasil® is for girls and young women ages 9 to 26.

Human polymorphism (HPV) affects both females and males. HPV transmission can happen with any kind of sexual, genital contact with someone who has HPV intercourse isn't necessary.

Many people who have HPV don't even know it, since the virus often has no signs or symptoms. That means HPV transmission can happen without anyone knowing it.

There are about 6 million new cases of genital HPV* in the United States each year. It's estimated that 74% of them occur in 15 to 24 year olds.

*Number represents more than 30 genital HPV types, not just HPV Types 6, 11, 16, and 18.

I have seen the commercial plenty of times. "I wanna be one less..." If anything, it got annoying and I would often mimic the young girls when it would come on. I knew the jest of what Gardasil® was. From the commercial, it didn't apply to me. It focused on young girls and young women up into their mid twenties. I figured I'm in my late twenties so I couldn't get the HPV virus and didn't need the vaccine. WRONG!

First of all, HPV can affect both female and males. Also, you can contact the HPV without having intercourse. It is stated that 74% of new genital HPV cases occur in 15 to 24 year olds. So who is the other 26%? What they don't stress in the commercial is that the vaccine, Gardasil® is only for girls and young women ages 9 to 26 years old. It doesn't mean that you can't get the HPV if you're not in the age bracket. I believe it is very misleading. Now HPV doesn't mean that it automatically guarantees you cervical cancer. However, if you do contact the virus you have to be screened the rest of your life. Cervical cancer is cancer of the cervix (the lower part of the uterus that connects to the vagina.) Unlike other cancers, cervical cancer is not passed down through family genes. Cervical cancer is caused by certain types of a virus, human papillomavirus (HPV).

While half of all women diagnosed with cervical cancer are between 35 and 55 years old, many of these women were probably exposed to cancer-causing HPV types in their teens or 20s. For most women who have HPV, the virus will go away on its own. But for some women who don't clear the virus, cervical cancer can develop.

When a woman is infected with certain types of HPV, and the virus doesn't go away on its own, abnormal cells can develop in the lining of the cervix. If these abnormal cells are not found early and treated, precancers and then cervical cancer can develop. Pap tests look for abnormal cells in the lining of the cervix before they have the chance to become precancers or cervical cancer. The more severe the abnormal cells, the more likely it is that cervical cancer will develop in the future.

I felt compelled to share this information on my page, since it has affected someone that I know. Like myself, she was mislead about the virus as well. Luckily she does not have cervical cancer, but now for the rest of her life she will have to be screened. It is just another matter that we should all be aware of. Cancer is so prominent in our lives now. We all know someone that has cancer, or know of someone that knows someone with cancer. It is a disease that we need to find a cure for once and for all. I hope by posting the information on my page, it will educate at least one more person.

All the information contained was found at www.gardasil.com Please visit this site for more information.

These past four years have been absolutey amazing. My life has had so many different things that one can only fathom having happen maybe one or two in their lifetime, let alone four years.  I have not shared all since I still need some privacy.  I have shared  a lot more than others though. I along with others believe that we could have a reality show and it would get high ratings. Those that get to go on Extreme Homemakeover have nothing over us. I'm not tyring to minimize their problems but we could totally get on that show!

I'm back in the hopsital. I came by ambulance, Thursday, March 12th and am still here. I have Graft vs. Host Disase flaring up. My eyes, my mouth, my gums, thrush, my esophagus, my stomach, a rash, and diarrhea.  All typical after bone marrow tranaplants. My immunosuppressant had been decreased a couple of weeks ago which lead to this. So I'm backup. Too bad we couldn't take out the donor's cells since they dispise my body so much. I'm unsure how long I'll be here. I need my rest. No visitors as I'm really groggy and trying to catch up on sleep.

Still no baby yet. Shell  is a few floors over from me. They let me see her today. What are the chances of that? We both got admitted the same time. Unbelievalbe. No news yet with baby. She's had some contractions but no baby.  I'm praying soon. We are all ready to see this beatiful baby.

MANY, MANY , MANY prayers are needed for our family.  Thank you much!!! :|

Hello,

I haven't posted in a while. I haven't been feeling very well. I wanted to let you all know what's been going on and to

also thank you for the outpouring of love and support of my last journal.

I have been in the hospital since last Wednesday and came to the
Hospice home today.  I became violently ill last Wednesday afternoon. I
was rushed to the ER and admitted onto the oncology floor.  My doctor
seems to think it was a gastrointestinal bug.  I was vomiting along
with diarrhea.  I hadn't eaten anything solid until today.  It had been
five days without . I was on a clear liquid diet at the hospital since
I was vomiting. 

I had not been feeling well for several weeks prior.  My energy level
was extremely low and my sleeping pattern was really off.  I had been
to my oncologist and my meds were once again adjusted. Of course my
body always reacts differently to medications.  Wednesday I was
supposed to meet with a doctor with pain and palliative care management
to see if we could figure out a new plan to help me get the sleep and
rest I need since I was no longer functioning well.  I had been staying awake all
night long and sleeping most of the day.  I felt very ill and ended up
canceling. That's when everything got worse. First I was going to go
straight to the hospice home, but then I started vomiting bile. My
oncologist said to go to the ER.  Of course it started storming at
this time so the roads were slippery.  They brought me in a double
wheelchair and I was so miserable that I just wanted to lay down. They
let me have a stretcher in the hall and from there I don't remember
much.  I had on a sleeper with the footies, my winter jacket and Uggs. 
I'm usually so quiet and polite even when I'm in pain or feeling sick.
Not this time.  I was having withdrawals because I hadn't taken my
meds.  I kept saying I need my medicine!   They finally got me into a
room in ER and I started vomiting again! My poor Dad, who does NOT have
a stomach for this was right beside me and gave me the bucket.
REMEMBER: for every breath you take, I'm taking at least two or three
breaths more.  Now think of the last time you vomited (I know, not
something you really want to do) but when you are in the act it's hard
to breathe right?  I had nothing in my stomach but bile and was hurling
so hard that I could NOT breathe. I thought I was going to die. I have
never been so scared in my entire life.  My parents had to witness
this. My Mom rushed to get a nurse. From there I just remember bits and
pieces. I woke up on the oncology floor in a bed and had my parents
sleeping beside of me on cots. I guess the time we got onto the floor
it was after 1 AM and the roads were bad and my Dad had been up since
4:30AM since he works.  I had finally been given some medicine from the pain
doctor which helped me sleep. 

All familiar faces came to greet me while I was there, always nice
to see my nurses but then again always nice to say good bye.  I came to
the Hospice home today for a few days of respite. I need some good
sleep.

I've been praying to God to let me see my nephew. Shelley is 3 1/2
weeks away from her due date. It has been a tough pregnancy.  But that little boy will be
entering this big world very soon.  I am determined to be here to
welcome him with my loving arms.  Auntie Jen loves you.

I'm outliving my odds as each day goes by. Each time this disease tries
to kick me down, I pick myself back up again.  Attitude. It's all about
knowing WHEN to use your attitude and HOW to use it.

I can never fully express how much I love my family. They are by far
the most amazing support.  They know when to give me that "tough" love
and when to let me figure it out.  Of course to all my "fans" (hee-hee)
your support brings me to tears (good ones.) I love each one of you
without even stepping foot in front of you.  The bond that us humans
can share is beautiful.


Peace, Love & Happiness,
Jennifer Willey

             SICK                                               but...                                     SMILING

• 114,739,200 seconds
• 1,912,320 minutes
• 31,872 hours
• 189 weeks