Hodgkins Lymphoma Awareness

My Journey Battling Cancer & Graft vs. Host Disease
Fighting for my life each day against the odds

My Journal Entries

view:  full / summary

Still in hospital

Posted on October 20, 2010 at 7:43 PM Comments comments (47)

Day 13 and counting here at the hospital. I was told yesterday by several people that I would be able to go home today. My parents brought home my Halloween decorations, cards and magazines last night so I would only have my bag to bring home today.

 

 

I was awoken this morning by the doctor on call to only tell me that I would not be going home today and would be staying through at least this weekend. I am disappointed. It is very hard to live my life with such uncertainty every day, but when someone tells me they are going to meet me at a certain time or in this instance be discharged from the hospital is very upsetting. This Friday makes two weeks I have been here. I know it's not that long. I mean back in March I was here for the entire month. Transplants are month long stays. If I added up all my hospitalizations, it would most likely equal a year. But who's counting? I just want to be back with my familiar surroundings, my own bathroom, wear my own clothes and not have to pee in a damn hat!

 

 

The reason I am staying through the weekend is that I tested positive for c diff. I got it from being here at the hospital. I caught it here last year during one of my stays as well. You can Google c diff., I suggest going to the medicinenet website for a true, to-the-point description of what it is. Basically, you have good bacteria and bad bacteria in your stomach. Since I am immunosuppressed and have been on many antibiotics, bad bacteria has flourished in my gut and a strong antibiotic to treat it is Flagyl. (NASTY!) If that doesn't work than an even stronger antibiotic, Vancomycin will have to be used. They want me to get better before going home. So, I'm here for the long haul. I miss my Halloween decorations. They were quite cheerful.

 

 

I've had my great nurses here on the oncology floor which always help to make me feel more comfortable. However, after the PEG was installed on last Wednesday I had SEVERE pain and even after being given lots of pain medicine, the pain would not go away. My nurse had to call the GI surgeons. I was moaning throughout the halls. (I have never had this much pain and have NEVER said much as boo before.) My nurses knew I was hurting. I was brought down around 3am for X-rays and cat scan of my belly. They thought that the tube may have perforated my stomach or colon or something. Pictures showed the tube was placed correctly, but I had a lot of extra gas built up inside. Very slow recovery. After all, I have a tube sticking out of my belly that hangs almost half way down my thigh. Not the most comfortable thing in the world.

 

I started my first tube feeding by a pump last Saturday. I was fed over a 24 hour period. It was only 10ml (2 tsps) per hour to start, and then was increased as I was able to tolerate. Over the 24 hours I didn't even get a 1/2 liter in to me. Yesterday made 3 weeks without solid food. I've had a popsicle chopped up here and there, a jello, a pudding. I haven't felt like anything though because it has been so long without food I feel nauseous. The tube feeding went well and was increased by 10ml each time. The pump takes a long time and if I were at home, I would be tied down by the pump. I was taught how to bolus feed yesterday. This is by gravity. I have a huge syringe that holds 60cc. I first flush with around 50cc of water. Then I pour my lovely (yuck) formula of Jevity into the syringe. I unclamp while holding the tube up and it goes into my belly. I take a certain amount and that is my meal. I should be getting around 6 meals a day of this with 3 hours in between. The point of this is to try to heal my esophagus and keep me sustained to stop losing weight. The neat thing about this tube is I can put most of my meds into it! Yeah weird, I know. I just put them in the tube with water and unclamp and there they go. I clamp it back up and done. I do feel full, even though I am only getting a total of 1/2 cup. The more I do it, I think the more easier it will become. I'm glad I am the strong one. I do have to give my Mom props though. She did my feeding last night while here. It is still very sore.

 

 

Well, that's the latest and the greatest. If you plan on visiting, please let me know ahead of time. I am still very tired and weak. As always, no germs you or someone you know that has been sick.

 

 

Oomph-less

Posted on October 12, 2010 at 1:07 PM Comments comments (21)

I haven't written an entry for a while since I have not been feeling that well. This is going to be a quick update as I am weak.

 

 

As I have mentioned before, I have trouble swallowing which has been caused by all the chemotherapy and radiation that gave me acid reflux. I have had several endoscopies and the last one in March, showed I have an ulcer at the top of my esophagus and one at the bottom. I took some medication for a period of time, it didn't resolve it completely, but I just tried to eat and drink what I could even though it hurt. To take just a small sip of water is even hard to get down. Between having severe acid reflux and oral gvhd, my choices of food is pretty small. I usually have a supplemental Boost for breakfast/lunch and then a small dinner and of course a dessert of some sort. The foods I always loved I can no longer eat.

 

Two weeks ago I felt like I had a sore throat. I do get these off and on, but this one lingered. It felt like a huge lump and I could barely swallow my own saliva. I went to the cancer center and was put on an antibiotic of levaquin liquid, this was in case it was a virus. Since I wasn't able to eat or even get fluid in, I had a few days of hydration in the treatment room. My lump didn't get any better, and I was still unable to eat or drink. Dr. Hedlund referred me to see an ENT (ears, nose and throat) doctor. He put a tube up my nose and looked into my throat but didn't see any irritation like a sore throat. He suggested that I should have a feeding tube because I am malnourished, not getting in enough calories to sustain me. I have lost 4 pounds thus far. He called my oncologist and I was directly admitted to the hospital.

 

 

I had an endoscopy on Saturday and then was sent over for a cat scan of my neck and chest. They haven't gotten the results back of the biopsies. However, the pictures of my esophagus showed a VERY large ulcer at the top of my esophagus. It is like a half moon and that is the reason why I can barely swallow. Also, my esophagus is very tight. He believes this is from the GVHD as well. I have seen the GI doctor and he wants to see what the results of the biopsies are, but it looks like I will be getting a PEG tube by the end of the week. You can do a search for PEG tube to see what it looks like and what it does. Basically it bypasses the mouth and esophagus. A G-tube (gastrostomy tube) is what will go into my stomach. If you go to www.Ross.com this will give you information on the formulas that will go into my stomach tube to give me nutrition. Of course I am nervous, since I haven't had this before. Also because one of the very few things that I am still able to enjoy is going to dinner with my parents every so often. It is nice to be in a different environment and to be out of the four walls of the house. It is going to be a very big adjustment.

 

Also, as I have said before, my veins have never been good for getting IV access. Since all of the chemotherapy I have had, it made my veins even worse. Every time I need a blood draw or hydration, I end up getting poked by several people many different times. My arms are all bruised again and I have had three IVs in 5 days. All have been taken out. This morning Dr. Hedlund came in to tell me that I would be getting a mediport placed in my chest again. The ports have come a long way since the last one I had. It is much smaller and plastic. I was sent down to radiation today around 2pm. They only give you sedation, so I was awake. It was painful as the surgeon pushed the port into place. I am in pain and can't move my neck much. This will subside within the next few days. At least I am now hooked up to IV hydration again getting much needed fluids.

 

My favorite CNA gave me a nice shower this evening and gave me heated blankets to crawl into my bed with. I have been given some pamphlets on the tube feed and of course it doesn't look like it's going to be that easy. I know though that I shall get through this too.

 

 

It just seems like it is one organ or body part after another. My breathing and coughing have been worse over the past couple of months. I haven't gone many places. Since the beginning of August I have laid low at the house. I was able to be attend my good friends, Jamie & Tim's magical day. They married on a perfectly sunny day and her loving family helped me to be so comfortable. On the other hand, my most valued friend that has stayed by my side throughout all of my illness, moved across the country. I do miss her, but I want her to be happy and to LIVE. If I was in her place I would be making choices just like her. So even though we are thousands of miles apart, we are still connected by our hearts.

 

Well, I thought this was going to be a quick update but it has now turned out to be a long one. I started it around 1 or so and had to stop several times. It is now almost 8:30pm. I wanted to add that I have been seeing an ophthalmologist for my ocular gvhd. I have mentioned how I no longer produce tears, have blurry vision, and have extreme sensitivity to light or TV. I saw the eye doctor and he suggested putting in silicone plugs in my lower tear ducts. These act like a plug in a drain. Tears come from near the upper eyelashes and run out of the ducts. The plugs will try to keep whatever tears are produced inside my eyes. I had these before when I was going to Mass Eye & Ear in Boston, MA. Unfortunately, these only irritated my eyes. I went back and he took those plugs out and cauterized my lower ducts. Yes, he burned them permanently closed. He first stuck needles into my ducts filled with lidocaine. Then he took the tool to cauterize and it smelled like burning. It didn't feel that great at all. Next he put silicone plugs in my upper ducts. If it still doesn't give me enough of wetness, he is going to cauterize my uppers. If that still doesn't help he will have to do eyelid surgery, which he said is very rare. He does say that my eyes are extremely dry. I am still having blurry vision and they are very sore when I wake up after sleeping.

 

Well from oncologists to pulmonologists to ophthalmologists to endocrinologists to cardiologists. Yes, I am now seeing a cardiologist. I have had heart palpitations off and on as long as I can remember. I do have a slight heart murmur but nothing major. As of the past month or so I have noticed more often than not palpitations with times of skipping beats. I have had to wear a heart monitor for the past two weeks. Each time I felt a palpitation I had to push the record button and enter into a journal what time/date, symptom, and activity. I am scheduled next week for an echocardiogram and then they will print out my results of the monitor to see what is going on. Hopefully it is nothing major.

 

So that is ALL that has been going on the past couple months. I don't get on the computer much anymore. If you write to me and I don't get right back, it is because I don't check my email every day. I will get back to you and I still REALLY would love to hear from you all. I haven't had many guestbook entries. I need some support of some sort. I am trying to keep on going just day by day. Sometimes those days are just really hard to get through. Then when I think about all my body has gone through and continues to go through I get so overwhelmed. The cancer floor here is my home away from home. I much prefer my other home though. The home that has my bed, my favorite stuffed animals, my clothes, shoes, pictures and parents.

 

I do have some friends that are sick, one who was newly diagnosed with AML and Sammi (the most amazing 13 year old in the world!) along with some others online that I have followed for a few years now. Please send prayers to them.

 

The world is not perfect, people are not perfect. I love my family and my friends. I am just really trying to focus on myself and I don't have energy for much else. I am exhausted. I have been burned again just when I thought I had found a great, honest friend. Life is full of lessons, some good, some bad. They say it makes us stronger. I guess I am more strong-minded, but my heart aches. All I want is peace. No more lying, no more arguing. Love is all we need. Love is all I want and nothing more. I love my parents, sister and brother-in-law and Godson. You are my family through thick and thin.

Happy Birthday Willa!

Posted on July 31, 2010 at 8:16 PM Comments comments (7)

I wanted to wish my forever baby Willa, a Happy 5th Birthday! Willa, not one day goes by without me thinking about you. You were brought into this big world 5 years ago today. You are the best thing that has ever happened to me. You may have had a stubborn side (you are a pig), but you gave me unconditional love no matter what.


We met on that crazy, windy, rainy day at Logan Airport in Boston on September 29, 2005.  Little did we know what the road ahead would entail.  We spent day in and day out lounging together on the floor, the couch, the bed. We were inseperable. You were my fierce little protector. I would come home from having chemotherapy for 6 hours and feel so sick, but you would make me smile. The time cuddling and learning your wide vocabulary range, made me truly feel like a mother pig.


Sadly, I became more and more ill and we had to part ways. September 17th of this year will make three years ago that you left the nest here. I thought that with time I would be able to be at peace with you having a forever home with people that could give you the care you needed. That has not happened. Instead you are always on my mind. When I think of you, I see you running around as a little piglet barking like a dog and jumping in my lap. When I picture you, I see those big brown eyes that showed so much emotion and love and understanding. While I go to sleep at night, I go to reach for you, but you aren't there. I miss you crawling down my legs and then crawling back up to rest your face on my chest, only to find your snout next to my "snout" in the morning. I can smell that "Willa" smell, I hear those little grunts and ahhs and oofs and it makes me so sad not to have you here with me physically. But I know that we will always be connected in spirit Willa. You will always be my baby, forever and ever and ever.


Happy 5th Birthday Princess Willa! Mommy loves you always.


Love Forever & Ever & Ever,

Momma

Another Birthday Celebrated!

Posted on June 26, 2010 at 9:07 PM Comments comments (16)

I can't believe it's been three months since my last journal entry. For those of you that don't know, I did have my gallbladder taken out on March 24th. I was nervous but asked my anesthesiologist many questions. He reassured me that he would use the medications I requested and they were all aware of my medical history and how bad my breathing is. I had a wonderful nurse in the prep room and she made me laugh. She had tons of dragonflies on her scrubs, and was wearing dragonfly jewelry. I have always loved dragonflies and butterflies, so this made me more comfortable. I did stay on the vent for a little while after the surgery, but didn't have to go to ICU. I awoke when I was being rolled back up to the cancer floor. I thought I was hallucinating because as I looked out the windows, there were huge snowflakes falling from the sky! My nurse reassured me that it was in fact snowing out. That's Maine weather for you. I have four inscisions from the laparscopic surgery. One in my belly button, one up above my belly button and two incisions on the right of my belly. I couldn't view it though, since bandages were covering everything. I kept asking if they took my belly button too. For some reason I was thinking that this was just another procedure like the 100's of other things I have been through. As soon as the heavy sedation wore off the extreme pain started. I was still recovering from the pseudomonas bronchitis and of course I have the chronic cough. So I just had an organ removed from my stomach and coughing all the time, didn't really help the situation. I couldn't move on my own. My nurses had to keep boosting me up in my bed. My bed alarm was put on because I was a fall risk. The commode was beside of my bed but I couldn't do anything by myself. Have I mentioned I HATE to ask for help? Well, at this point I had no choice. I had to keep ringing my bell. I felt like such a helpless child. This isn't the first time of feeling helpless. I know that is the nurses job, but it still doesn't make me want to have to ask for help. I ended up staying in the hospital until March 29th. I was there for a month!

Coming home I had to start over again to regain strength. After being so ill and having surgery, my body was so weak. I lost just about 15 pounds (fluid from steroids) and had been bedridden. I am still on steroids. I could barely walk and the pain in my belly was unbelievable. I am not one to complain and have such a high tolerance level for pain, but this was pretty bad. It took me about a month to get back to my "normal."

I have mentioned in the past in my journals that I have had many connections with the local Cancer Community Center. I attended the support groups for lymphoma with my family in the beginning of my cancer diagnosis. We then moved on to attend the stem cell transplant support group and then I became too ill to attend groups. However, I did have a buddy for the first year of diagnosis. They have a buddy program for people going through treatments that would like to have someone else to communicate with that has had cancer and understands some of what the other person is going through. Although I never met my buddy, we did chat on the phone and connect by email. I'm proud to say that he has been in remission for several years and has a wonderful family with his wife and two children. I wanted to become a buddy, but was unable to because I kept getting more sick. I have kept in touch with the coordinators at the Community Center. When my parents and I were attending the groups at the center, we had asked if there was a group for just young adults. Every time I would go for treatment or to the groups it was always older people. It is hard to relate to someone that is older that has lived a good life with children and grandchildren. I kept digging to see if anyone else was interested. Just as this began to become more than an idea, I was admitted to Brigham & Women's Hospital in Massachusetts. A couple of my friends lead the idea into a reality and it became Live2Thrive. Unfortunately, I was never able to go to the meetings of organizing it and attend the monthly dinner meetings. Although it is a small group that varies in size each month, the people are wonderful. While I was in the hospital in March, a lady contacted my Mom that had gotten my name from the community center. We talked a little bit on the phone and finally got to meet at the monthly dinner meeting with Live2Thrive in May! I hadn't met anyone before. I was picked up and then taken home after the dinner. It was a small group of around 8. I immediately connected with Donna and a few others. Since then, I have done more the past month then I have in the past 5 years of being sick!
They give me love, affection, attention, and tons of laughs. I had come at a very "low point" of my life and asked God for one simple thing, to help me. My prayer was answered on May 3rd. Donna, Jess, Jamie, Sue have given me the opportunity to start living again. They look past my illnesses, the wheelchair, the oxygen and my flat you-know-what;), and see me for who I am on the inside. I am caring, loving, giving, and full of laughs too! Just because I am disabled, doesn't mean I can't be a part of other people's lives. I forgive the friends that have moved on and haven't found time to keep me in their lives. But I won't forget. It hurts because I didn't ask to get sick or have to be on oxygen or need a wheelchair to get around. I love my friends like family and it's heartbreaking to see so many of them move on. I know now these new friends are for life and will not ever leave me. They have accepted me and my situation. I am blessed to have them in my life now.

So many of you have seen my latest picture on here and commented saying how great I look and how healthy I appear. While this makes me feel good, it also makes me wish I were healthy. I am far from healthy. I know I sound like a broken record to all of you that have read through my journals, but for those of you that haven't, I always try to explain my situation in layman's terms. I have many illnesses that have come from not just the cancer, but the numerous treatments I have had. I had so much chemotherapy, radiation, two bone marrow transplants, several clinical trials and many medications. I suffer from osteoporosis, hyperthyroid disease, ulcers, GERD, neuropathy, possible cataracts(eyes), occular gvhd, oral gvhd, gvhd of the esophagus, chronic fatigue, chronic pain, insomnia, severe constipation, etc. But the worst of my condition is my lungs. My lungs were attacked by the donor's cells that were given to me that also attacked my tumors. Only 3-10% of patients get this. Of course, I always fall into the small percentage category. Anything to do with lungs is IRREVERSIBLE. I cannot express this anymore. So when people ask if there are second opinions or something else that can be done, it is very sad to say but NO nothing can be done. There is NO cure. The even worse thing is that this is terminal. My prognosis is 10% chance of living the next year or so. I know a lot of you right now are saying 'well those are just statistics and Jen you have already beaten the odds so much. What about the lung transplant?' Well, my body is still very weak and I am still on many medications, still immuno compromised still on steroids.  Also, August will only make 3 years since I had my first clean scan. The Cleveland Clinic and the Pittsburg Clinic want me to be 5 years cancer free. So, that is not in my near future and remember I don't prepare for future because all we have is today.  I was in hospice on my death bed, which many still can't believe or understand. I am NOT looking for self pity or to be wishing my own death. Who or Why would I want to die now? I mean, hello I am still a baby. I live each day as best as I can. If today I wake up and feel like blah than I am going to lay on the couch and listen to what my body needs. Tomorrow maybe I feel like going for a ride and putting some lipstick on with my high heels. Does that mean that the day after tomorrow I'm going to want to go out again? Maybe, maybe not. Just like no one can predict the future, I can't predict how I'm going to feel. Or just because I'm feeling good today, does NOT mean I'm going to feel great tomorrow. A chronic illness is just that. I am not a healthy person, nor will I ever be again. OK, I KNOW I am sounding redundant, but there are others that just do not understand this situation. This may be viewed as being negative, but I call it REALITY. I know that people who have been in similar situations will understand. Until you yourself have been diagnosed with a life threatening illness, you can't understand and you can't empathize. Geesh, I am sounding mean now! I'm really not. See, like I've said many times I always prepare myself for the worst, but hope for the best. Since I have had so many things go wrong, it helps to be prepared for it and not get my hopes up.

I've been having some issues that have been enough for me to put a call into the cancer center this past Tuesday. I have a unexplainable rash on my belly and on my back located on my spine. It doesn't itch but it is of concern because a rash usually means a flare up of my graft vs. host disease. I've been experiencing a lot of breakthrough pain throughout my joints/bones/muscles. I've been having headaches everyday and insomnia. The humidity makes it so much harder on my breathing as well. I have been lying low on the couch and am thankful for the air conditioning in the house. Also, since I am on many medications, my poor intestines don't function like they should. This has been going on for years, but even with all the medications I take to try to help my bowels, nothing has helped. I know a lot has to do with inactivity, because everything that goes into my stomach just sits there without movement. I suffer from bloat and my belly becomes very hard and uncomfortable. I am going to try to see a gastroenterologist soon. I was unable to see my oncologist since she was on vacation and saw the NP. I didn't get answers and so will see my doctor in a couple of weeks. If anything worsens, I will need to call. It is frustrating when you go seek professional help and come away with nothing. It's hard to not worry when you get a little bump or a bruise after you get diagnosed with cancer. Your life is never the same. I try not to think about things too much, but I want to be on the safe side and I want to live, so I take care of myself and when my body is doing something that I know isn't my "normal" I seek help. I'm still here, still hanging on. I saw another birthday on June 16th! My third one since I was told I wouldn't see another birthday in the beginning of 2008. I am a true fighter and survivor. I already feel like I've won the battle with not just cancer, but with life. No matter what illness, or what person or obstacle tries to knock me down, I always get back up. Still taking it one minute at a time, down days with the good days. Life isn't perfect and no person is perfect. I have tried to make my life as good as I can. For today is all we have and tomorrow is not granted. Right now, I am happily content sitting on the couch in my pajamas while watching my godson run around giggling and watching Sesame Street. We have him for the night and will spend time with him tomorrow. He brings me lots of joy AND he just started saying Auntie! That just melts my heart.

Again, thank you for following me on this long (5 years on May 26th) journey. I love you all and am blessed for the support you have given me through these years.

Always in my heart forever. 

Keep Smiling, Fighting & Laughing!

Jennifer

Sickly

Posted on March 23, 2010 at 12:45 AM Comments comments (16)

I haven't forgotten about you all. I have been extremely ill this past month. I was admitted by ambulance February 23, 2008 to the hospital and stayed for 19 days. I woke up that morning with sweats/chills, a temperature of 103.6 and vomiting. After a couple chest xrays and some examinations it was determined the bronchitis was back. I could barely talk and was absolutely miserable. Breathing was also worsened. My appetite was so poor that dietary from the cafeteria came up and told me I was losing too much weight and needed to order something. 

On March 4 I had the scope. I had already had an appointment set up with gastroenterology to have an endoscopy. (Instrument used to examine the interior of a hollow organ or cavity of the body (esophagus.) Unlike most other medical imaging devices, endoscopes are inserted directly into the organ. I have been having trouble swallowing food, pills and liquids for quite some time. So I waited several days to have the procedure. Anesthesia was working with the doctor because of my lung disease. Each time I have an operation now that requires sedation, they have to be extra careful because of my poor breathing.  So I finally had the scope with a little bit of worry, but did good and the findings were I have ulcers in my esophagus. One that starts quite high. It showed that all of the pills I take on a regular basis don't digest right away. They sit in the esophagus and therefore have caused a burn/ulcer.  Also further down I have an ulcer where food sits.  This may explain why I feel so full so fast when I eat and don't usually get an appetite.  They started me on Sucralfate an oral gastrointestinal medication primarily indicated for the treatment of active ulcers.

So while I was in the hospital I had another spell of severe belly pain and vomiting. The pain is so excruciating and unrelenting. I had pain medication through my IV and was given heating pads. 

On March 5 the doctor on call came in and told me that my white counts had jumped quite high and they were going to look into the reason why. Saturday, March 6, my sputum culture came back positive. I was diagnosed with pseudomonas bronchitis. Pseudomonas bronchitis is common late in the course of cystic fibrosis or those with lung disease. Put on an IV antibiotic that lasted 8 days. At least another full week in the hospital.

During this time, Mom was diagnosed with bronchitis. She NEVER gets sick. She hadn't been sick since before I was diagnosed with cancer 5 years ago! So she had to stay home and rest. It gets lonely in a hospital, but I really needed the rest and felt so poorly anyway. 


Saturday, March 13, day number 19. I was discharged late afternoon. Mom and Dad brought me home and I immediately hit the couch and fell asleep.  I didn't wake up until Mom brought me to my bed. I was still feeling so terrible.  Monday, March 15 was Jackson' s 1st birthday. We can't believe one year has gone by. No more little baby. Jack is such a sweet happy baby and we all love him so dearly. He brings us each so much joy.  He is almost walking and guess what he calls my Mom? Gaga! It is so cute. We are still working on Mommy, Grampy, and of course Auntie. Jack had a birthday party at my sister's house on Monday and even though I felt ill, I couldn't miss it for the world. Jack was so happy. He came home with us that night and then Shelley and Jack spent the week with us.

Friday, March 19 around 1am I woke up to excruciating belly pain again. I had a little diarrhea and then proceeded back to bed. Shelley was still up and came in my room to ask me what was wrong. At this point I was writhing in pain. She woke up Mom who told her to get the heating pad. Before she could find it, I was vomiting again. Sweats and chills again. The ambulance was called and Dad rode with me, while Shelley followed in her car. Mom stayed home with Jack.  In to the ER/ED. What an absolute nightmare. It took forever to just get me pain meds. I vomited again and was still writhing in pain. This isn't the first time we have experienced issues in this department.  Shelley started not feeling well and left around 7am. At that time they had told us that a room would be ready shortly on the oncology floor.  Shift change and so did attitudes. I was then told there was no room available and I had to drink a pint of crap to have a cat scan of my g.i. tract. After I had just puked my brains out. My Dad was so upset. I refused to drink the stuff until later on when I had my medication and was able to keep things down. We were in the ED for 10 hours!  This isn't LA, it's Maine!!  I had begun drinking the "nasty-looking koolaid" before I got to the cancer floor.  My nurse helped me to finish it. I was so overtired and in so much pain. They took me down for the scan and when I got back to my room I was so agitated.  I was given a PCA (pain pump.)  I finally fell asleep and my Dad stayed with me until 5:30pm.  I felt so bad because he was so exhausted. Shelley picked him up and brought him back home.  Saturday I felt a little better but was told that my scan showed my gallbladder was distended, had fluid all around it and had several stones. This is what may be causing all the belly pain and vomiting.  I was asked if I had a preferred surgeon which I do.

Yesterday, Sunday, was the day from hell.  I had diarrhea all day and night long. They wouldn't give me anything to relieve it because I was on C. diff. precautions. They needed one more sample to rule it out. No eating or drinking all day yesterday. I needed help everytime I had to use the commode. They had my bed alarm on because I was a fall risk. The diarrhea finally ceased around 5am Monday morning. Monday I was just so exhausted. My parents showed up at 7:30am. They wanted to meet with the team of doctors to hear exactly what is going on.  Since I've been here I haven't been allowed to eat or drink and then they told me I can't eat or drink anything after midnight. So Mom went to order me some dinner tonight and they said I can't have fat. See the gallbladder process fatty foods and that can bring on the pain. So me being the picky eater was hard to find something. I ended up able to eat a grilled cheese and sherbet. At least something in this body. After all of this I have lost 10+lbs, of which I did not need.

So here it is Tuesday morning 12:40am and I am beyond exhausted but wanted to update all of you that aren't on Facebook.I only wrote I'm in hospital, no details like this.  I MAY have surgery today (Tuesday) I am not sure though.  Because I have lung disease, anesthesia has to meet with my pulmonologist and the surgeon and my oncolgoist.  In a healthy person, this would just be another surgery. For me, the risks are much greater. I may have to go on a ventilator afterward. I pray all goes well.  I just can't believe I have ANOTHER thing wrong with my body. Well, I could have written more, but just wanted to tell you the important parts.  I need the prayers flowing for sure now. 

Much love, peace & happiness,

Jennifer


Help for Hope

Posted on February 17, 2010 at 9:26 PM Comments comments (32)

I took a little break from writing journals, partly because nothing really interesting has happened, but mostly because I haven't been feeling well physically and emotionally.  I have been open and honest throughout all of my blogs.  I haven't given all information,but I do draw a line in how much I want to share since everyone needs some privacy.  As I have said throughout the past (almost five years) has been a roller coaster of ups and downs.  The past six months have been the most hardest on me. I have been very down.  I was reading through some of my old journal entries and came across one from July 25, 2008, Who Am I? I read it and found that 1 year and 7 months later I am still having these same feelings but the hope now is nearly non-existent.  Here are a couple of excerpts:

I've been really trying to find this "quality"of life.  It's not as easy as it sounds.  To really truly find inner peace with yourself and be satisfied with who you are is a lot of work.  It takes so much energy physically, mentally, and emotionally. Put on top of that an illness, and my other trials is quite a bit to say the least.  For me to come out and say or type out in my journal that I AM STRONG is huge.  I have never been one to brag about myself or look for pity or be the center of attention.  But if I step back and look at me and what I've been through and where I am at today right now, I can only say wow.


I have been such a giver, a cheerleader for so many people over the years of battling my illness but haven't really stepped back and taken a break to receive.  Many have asked me what I do for myself but I really don't have a simple answer. I am who I am. A giver. I get happiness by making others feel good.  I guess that's what I "take." I know that's probably not "receiving" in some people's eyes,but it is what I see.  I do love receiving messages in my guestbook of people praying for me and sending me good healing vibes or sharing their stories.  Hope, faith, and love.  If you've got these then you've got life.  It would be too easy for me to just shut down and give up. Believe me it takes a lot of energy to just get out of bed each day.

So this journal from over a year and half ago is still haunting me today. I am still trying to find that quality of life. I still have not "accepted" my situation but I still have my faith and love to give, but my hope has truly faded.  To those of you who are going through a difficult situation and don't like to ask for help or feel stupid for feeling depressed, please know you are not alone.  These feelings are normal. Counseling is a wonderful thing.  It helps to speak with someone that is neutral and will keep your talks confidential.  Mental health is just as important as physical and I truly believe they are very closely linked.  Having positive feelings  will in turn make your physical body feel "good." So don't ever try to hold in feelings because you feel stupid or don't want others to think you are "weak."  One thing I have learned through this is by asking for help only makes you stronger. I have always remained so strong for myself and others as well.  My family, my friends, and for all of those that read my story I don't want anyone to think I didn't give it my all.  I don't ever want to "give up" or have others feel like it's okay for them to stop fighting for their life.  I am still in contact with many others that are ill. I give them my prayers and send them my love. The one issue I still have is not doing anything for myself. I don't like to ask for help or have people give me lots of attention. It's just how I've always been.  But now at this time, I am asking you all for your support. I need it now more than ever.  I need some guestbook entries and some pick-me-ups.  I have started up counseling again. I feel like I don't have anything going for me.  I have lost a lot of friends. I know people have busy lives and sometimes it is easy to lose touch.  Although, since I have become "disabled" and need to be pushed in a wheel chair and need oxygen, I have found I don't get invited out as much as I once did.  I don't get visits as much as I used to either.  I know it is hard for others to transport me around with the chair & oxygen. Also I can't go everywhere with it.  I can't say it enough, my situations sucks. The hardest part is knowing my lungs can't get any better.  All I can say is that I am still Jennifer. I still have feelings. I can still laugh and love.  I am a great friend. I know that I'm not the best to be around all the time,but I try to be happy for the most part. I love to see people and listen to their lives. I'm still alive and I deserve to be treated with respect.  I too need love.  So here I am asking for some much needed hope and love.

 

Thank you,

Jennifer

 

Wash Day

Posted on February 16, 2010 at 7:14 PM Comments comments (5)

Wash Day: A Good Example of Christian Living

(This was forwarded to me through email and I wanted to share with all of you.) ~Jen


Monday  WashDay  

Lord, help me wash away all my selfishness and

Vanity, so I may serve you with perfect humility

Through the week ahead.

Tuesday  Ironing Day  

Dear Lord, help me iron out all the wrinkles

 Of prejudice I have collected through the years

So that I may see the beauty in others.

Wednesday Mending Day  

O God, help me mend my ways so I will not

 Set a bad example for others. 

                                                

Thursday Cleaning Day

Lord Jesus, help me to dust out all the many faults

I have been hiding in the secret corners of my heart.

Friday Shopping Day

O God, give me the grace to shop wisely so I may purchase

Eternal happiness for myself and all others In need of love.


Saturday Cooking Day

Help me, my Savior, to brew a big kettle of brotherly

Love and serve it with clean, sweet bread of human kindness.


Sunday  The Lord's Day   

O God, I have prepared my house for you. Please

Come into my heart so I may spend the day and the

Rest of my life in your presence.

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

 

 

 

 'Be kinder than necessary, for everyone you

meet could be fighting some kind of battle.'

  

   

  

 


Happy Holidays!

Posted on December 13, 2009 at 9:57 PM Comments comments (12)

Hello, I want to wish you all a very happy holiday season.


It's been just about a month since I last updated my journal.  I am just now getting over the bronchitis. I had it for a month.  Thank God it did not turn into pneumonia.  Since I am immuno suppressed and ill, my body takes extra long to fight the infection as does a healthy person. I am still chronically exhausted, sleeping/snoozing around the clock. Haven't been anywhere still, which means no Christmas shopping.


This time of year has been difficult for me the past few years. It used to be my favorite time, but now with so much that has been lost it is hard for me to be purely joyful. I know what Christmas means and I always celebrate the beautiful day.  I am very lucky to have my family as well.  But this isn't the way my life is supposed to be. By now I should have my family, my career, my house, and living life to its fullest.  But, I'm not because I can't.  But I do have control on how I respond. So I'm going to try to enjoy the season as much as I can with my family. I hope all of you do the same. Be truly thankful for all you have and I don't mean material things. Be thankful for your health, your family, your friends.


I met with my team in Boston at Dana Farber Cancer Institute last week. As I had mentioned I hadn't been there for almost two years.  I was so sleep deprivived that I couldn't keep my eyes open, nor hold conversations with my doctors. Thank goodness my parents came. I met with my pulmonologist and he had contacted both the Cleveland Clinic and the Pittsburgh clinic. Only Cleveland had responded. They still say they won't transplant until the patient is 5 years cancer free.  But they might consider me if I traveled out there to see if they can physically transplant me.  It would consider having me go through numerous rigourous testing. One of which involves having catheters. It is no easy feat. My doctors agree that at this time, I still need to gain strength and get off more of my medications. So Dr. Ho has started tapering my medications. The one thing I am scared of tapering is my prograf (tacrolimus). I have been on this immunosuppresant for over three years.  It is given to one after different types of transplants so you won't get GVHD. HA!!  It was raised when the GVH started going wild in my body and which lead me to this end stage lung disease.  So when we start to taper, my GVH might flare up again. I'm praying it won't because I don't want to go back into the hospital.  It was nice to see my team in Boston again. Dr. Ho was so happy to see me looking better than what he left me back in the beginning of 2008.  He is wondering why my iron level has been so low though. He said I did look exceptionally pale.  Overall, it was a nice visit but not much more information about the transplant, other than it is more future than what I had thought.  No decisions to think about yet.


I did go see my oncologist at the cancer center here last week, since my bronchitis just seemed to keep holding on. From the beginning of my cancer diagnosis from all the chemotherapies, radiation etc. I have gotten extreme acid reflux/GERD.  I am on strong medicines to help control it, but nothing seems to truly help it.  It is often hard for me to even take a sip of water. I have had a few endoscopies in the past to try to figure out the problem. So another one is being scheduled for the new year.  Never ending tests. Other than that, just sleeping and snoozing. I can't seem to get out of my own way.  This Christmas will be spent with my family and it will be my Godson's first Christmas. We are all excited to watch him go wild. He is just about walking and will turn 9 months on December 15, Tuesday.


I wish each and every one of you a blessed holiday filled with peace, love, health, & prayers. 

Love, Jennifer

Am I on Candid Camera?

Posted on November 17, 2009 at 11:01 PM Comments comments (13)

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 is precious

Posted on October 19, 2009 at 10:57 PM Comments comments (7)

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

Fight2Win

Posted on June 28, 2009 at 4:40 PM Comments comments (2)

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

Goals

Posted on June 27, 2009 at 8:58 PM Comments comments (17)

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

 


Steroids = no sleep

Posted on April 8, 2009 at 6:04 PM Comments comments (10)

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. 


Rss_feed