Hodgkins Lymphoma Awareness

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

My Journal Entries

Still in hospital

Posted on October 20, 2010 at 7:43 PM

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.

 

 

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47 Comments

Reply dawnsisson
3:58 PM on August 8, 2011 
I have been afraid to check Jennifer's site for the very reason that I have now had confirmed. My heart just broke as the page came up. I know it was November now and that makes me even more sad. I don't know why. just sad!
Though I never had the honor of meeting her in person, I felt like I had gotten to know her through email and of course through this site. A beautiful young lady - taken too soon! Way Way too soon! I pray for PEACE for her family. I especially send prayers for her parents as I know the journey they really have only just begun. LIfe just does not make sense sometimes and this is one of those times for sure! The loss of a child is really more than anyone should ever half to live through. I have lived through this loss for almost 11 years and I still miss Tiffany as much today as I did then. You just have to take it one day at a time and try hard to focus on the positive memories. Hugs and prayers and tears....
Reply Sara
3:45 PM on January 4, 2011 
I saw Jennifer's story a few years ago on MyCrazySexyLife and was immediately moved by her tenacity. I've checked up on her journal every month or so since then, always in hopes of seeing that her health had improved, and I'm so sad to find out that she has passed away. Still, I'm grateful to think that she is finally free of pain. My thoughts are with her and her family.
Reply Kathy
2:01 PM on December 29, 2010 
I think about you everyday Jennifer and cannot even begin to relate to the struggles and challenges you faced on a daily basis for so many years. You are a true inspiration. Although I had never met you physically, I can see your beautiful face as clear as the sun shining through my windows. I wil never forget you and the journey you so openly shared with the world. May God continue to comfort your parents and your family. Fly high and spread your wings sweet angel....you have so much to be proud of!!!
Reply Leisa
2:12 AM on December 26, 2010 
Oh my. I haven't been on here to check in for quite some time. I always think about Jennifer and she has been in my prayers regularly for years now since reading her blog. I knew I hadn't seen an email saying she'd updated her blog for a while. But in the past year, she didn't very often. I came by today to let her know I was thinking of her on the holiday and to send well wishes. I am so sad to hear that she has passed away. I know she had a very difficult struggle for a long time and I know there is peace in knowing that she is not suffering any longer and is now reaping the glorious rewards that we all hope for one day. But I know there is great heartache for her loved ones trying to understand why she ever had to face this horrible disease. I started reading Jennifer's blog after losing my mother at 59 years old to Leukemia 26 days after she was diagnosed. I had no time to do so many things I would have liked to have done or say things I would liked to have said if I had known she wasn't going to pull through and she had more time. The many years that Jennifer beat the odds and was hear to share with her family and friends were a true blessing as that isn't always possible. So to her loved ones, please cherish the many memories you've made both before and during her illness and take comfort in knowing that she knows without a doubt how much she was loved. RIP Jennifer. I will miss your posts and am so very appreciate that you shared your journey with us. Thank you dear sweet girl.
Reply Lauren
8:03 PM on December 6, 2010 
I miss you Jennifer.
Reply Kathy
2:11 AM on December 6, 2010 
I have followed Jennifer's journey for quite a few years now. I am just a few years older than her and I happened upon her web page at a point in my life when I had not been felling well. I was sent for multiple testing as the doctors possibly suspected Lymphoma. Fortunately, my tests were all negative and today I continue to live as a healthy adult. I never stopped to reading Jennifer's journal entries. I do not know her personally, but her story makes me feel as if I do. She had a magnetism about her, a way of drawing people towards her. I feel so close to her....I don't know, maybe it's sounds crazy. I just read of her passing a few shorts minutes ago, and while I am happy that she is in His arms, I am sobbing....literally sobbing, short-of-breath, because I am a young woman, married and blessed with 3 beautiful kids, and there are so many times I take things for granted. I should not be angry with the Lord or question His plan, but I am just so sad........God bless you Jennifer and your family......I hope you are dancing with the angels.......thank you for sharing your life with us.
Reply LeeAnne and Sammi Bye
11:29 PM on November 30, 2010 
Sammi and I are heartbroken in tears.. Sammi has been so worried about Jen and trying to text to her...we love you so Jen...we are glad you are free and healthy and whole but our hearts are broken to find you have flown from us... God speed you precious, dear friend...we Love you forever and hold you in our hearts... With deepest sorrow and heartache...Sammi and LeeAnne
Reply Bekah
12:26 PM on November 30, 2010 
This is a link for Jennifer's obituary, I thought we should probably share... for those who are unaware of the passing of this beautiful spirit

http://www.pressherald.com/news/jennifer-willey-31-documented-can
cer-battle-online-_2010-11-25.html
Reply jenn Gerow
5:24 AM on November 27, 2010 
I went to Jennifers' wake yesterday. Lots of lovely pictures of Jen and her family, including Willa.
My favorite object was the angel pig light, really great and perfect for Jennifer.
so much love expressed yesterday
You'll be greatly missed Jennifer!!!
Reply Jenn Gerow
11:07 AM on November 26, 2010 
well put crystal!
Jen has affected sooo many people
she will be hugely missed
jenn


Crystal Blais says...
To Jenn's family and all her friends, my sincere condolences. I have known Jennifer since her sophomore year of college. We instantly bonded and have remained in touch since then. I am overcome by the bitter-sweet feeling that fills my heart. She touched so many lives and will continue to do so in this website. I am a better person for having known Jennifer - her perseverance and attitude has been that of a saint. May she finally rest and do all the things she has longed to do for some time now. You will forever remain in our thoughts and hearts Jennifer. xoxox

Fondly and with love,

Crystal
Reply Crystal Blais
7:17 PM on November 24, 2010 
To Jenn's family and all her friends, my sincere condolences. I have known Jennifer since her sophomore year of college. We instantly bonded and have remained in touch since then. I am overcome by the bitter-sweet feeling that fills my heart. She touched so many lives and will continue to do so in this website. I am a better person for having known Jennifer - her perseverance and attitude has been that of a saint. May she finally rest and do all the things she has longed to do for some time now. You will forever remain in our thoughts and hearts Jennifer. xoxox

Fondly and with love,

Crystal
Reply Anna
7:23 PM on November 23, 2010 
OMG! I am so heartbroken over this! To Jennifer's family, please know that she was my inspiration to get through all my treatments and we've been praying for her... please know that all of are in my prayers... may warm and happy memories of Jennifer in better days fill your hearts and thoughts... HUGS!
Reply angie nader
2:28 PM on November 23, 2010 
yes its trully very sad. i have been following her journey since 2006 when my husband was diagnosed with hodgkins. i told him last night that i though something happened to her, he was devastated. he is still going through treatments and she was an insperation for him.
to her family: i'm so sorry to hear of Jennifers passing. i hope all of the beautiful memories you shared with Jennifer, will carry you through these days.
Angie
Reply jenn Gerow
7:30 AM on November 23, 2010 
Hi Angie
i hate to be the one but i'd want to know if it was me.....

Jennifer passed away Sunday night. I don't have the details other than that. I found out through the Cancer Comm Center in Maine.

very very sad
Reply angie nader
6:26 PM on November 22, 2010 
Hi Jenn...i'm confused by your post. did something happen?
Angie Nader
Jenn Gerow says...
I wish we could have had our lunch date jen.....

now you can run, dance, laugh.....

you'll be missed and you were/are a huge influence on so many people
Reply Jenn Gerow
5:53 PM on November 22, 2010 
I wish we could have had our lunch date jen.....

now you can run, dance, laugh.....

you'll be missed and you were/are a huge influence on so many people
Reply Lauren
1:56 PM on November 19, 2010 
Jennifer....Thank you for everything. I love you.
Reply Debs
5:50 PM on November 17, 2010 
Haven't heard from you in a while on ur fb page, no updates on here either Jen, so I hope things are going ok for you, always thinking of you and praying that you will be getting stronger :) x
Reply Trina
11:35 AM on November 17, 2010 
Thinking about you lately, so wanted to say hello and love you. I hope you're doing okay.
Reply Jenn Gerow
6:50 AM on November 4, 2010 
thinking of you jen

HUGS
jenn