Hodgkins Lymphoma Awareness

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

My Journal Entries

Oomph-less

Posted on October 12, 2010 at 1:07 PM

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.

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21 Comments

Reply Holly
9:00 PM on November 3, 2010 
Hi Jen,
I think of you often and read your blog. You amaze me with your strength and attitude. After all you have faced, you keep fighting. You inspire me to live every day to its fullest, laugh often and surround myself with the people I love. I am sending positive, healing thoughts your way. I hope that your stay in the hospital is not a long one and that you can quickly be back in the place we love best...home! : ) You are in my thoughts!
-Holly
Reply deborah
7:51 AM on October 20, 2010 
dear jennifer. you are an inspiration to me, today and always. you are so courageous, i wish i could be more like you. i hope you get a new laptop so you can easily read and share your thoughts--you are quite a prolific writer.

i do hope you are improving daily; please know, you are in my thoughts and prayers each day.

deborah
Reply Ann
11:07 PM on October 17, 2010 
Hi Jen,
I think about you and was so glad to get your email and update. You are going through so much yet have so such a positive outlook - inspiring. I hope you are able to enjoy the beautiful fall weather and scenery now and then, and hope the feeding tube is a temporary issue and your eyes are better soon. will continue to think about you often, lots of prayers and love. xoxoxox, Ann
Reply Jenni Renee
8:20 PM on October 17, 2010 
Jen, I am praying for you constantly and know just how you feel. In a way stuck however I want you to know that I have a feeding tube in my stomach after having an almost deadly reaction to a drug I was on with my chemo. It has actually bettered my quality of life because I am getting the nutrition that I need. I know you are tired but keep smiling and I will do the same from my end. Love you Jen!
-Jenni Renee
Reply Ruth
3:59 PM on October 17, 2010 
Hi Jennifer,
I read your update and what an update it is. It seems as though you have much to overcome. How difficult it must all be for you and your family. You have brought so much light into my life and continue to do so. I am praying that all you are going through right now will be short lived and that you will soon be able to eat those things you love so much. I am always thankfull for your kindness that you show to everyone. I think about you every day and wish you healing.
Ruth
Reply Jamie
11:10 AM on October 16, 2010 
Hey Jennifer,

I hope you feel better very very soon.

Take Care,

Jamie
Reply Jenn Gerow
10:02 AM on October 16, 2010 
Hey Jen
I'm so sorry you are going through this difficult time, damn...so sorry...

I would love to come visit if you are up for it sometime soon

xoxo
jenn
Reply Esther Briand
7:55 AM on October 16, 2010 
Hi Jen,
Thank you for the update! You are a beautiful woman! So courageous and strong and you are overcoming all the obstacles, although each one of them very tough. God is on your side....He is giving you life each day and has you in the palm of His hand!

I'm thinking and praying that today you are feeling a little better and can see the beauty through the adversity. Don't give up!

Love, Esther xox
Reply Julia Duross
11:25 PM on October 15, 2010 
Hi Jen,

I'm sorry to hear you are going through more s&!t!! You do not deserve this! You are truly an inspiration and I think of you often! I am sending LOADS of prayers and positive thoughts your way! Take care!!
Reply Bethany Harrington
12:31 PM on October 15, 2010 
You are so brave and so strong! I think of you almost every day and wish that there was something I could do. Stay strong, girl! You are beautiful! :)

Love, Bethany
Reply beverly smart
8:09 AM on October 15, 2010 
You are such a brave lady and we all wish to God you could find a cure. I am Karen's mother.
Reply Donna Van Horn
11:19 PM on October 14, 2010 
Jen,

I just read your new entry and it brought me to my knee's. You are a strong, amazing, beautiful women, sprit, and soul. As you stated you have been through alot theat no one should ever have to go through. With everthing you have been delt with you always seem to try to have a positive smile and outlook even when it's not that easy at all for you. I my self admire you and your strength. I agree 100% life is a gift, to short to be fighting, arguing, or any other petty stuff and we all shoulf be greatfull for everyday you are here with us with your love and ours. Not a day has gone by that my heart doesn't ache exspecially when i look at our many memories we with our many friends have made together. So, please for give me as life is to short. Forgiveniss on all parts. I love and care for you deeply. I'm so sorry you are having to go through this. Just know no matter what u choose i'll be think, praying, and sending positive thoughts your way all the time thats a promise i will do and keep. If you decide you want to talk, or see me i will be their. Say hi to your mom, dad, sister, and jackson. Oh i can't for get matthew, alexandra, and mauve. Anuti loves and misses them too. Well i think i have written enough for your sore eyes sorry. Stay warm with the heated blankets coming!!!! I'll be praying hard.

Love you more than you know poopacracka!!!!! :)

Donna Van Horn
Reply Sherry
6:32 PM on October 14, 2010 
Dear Jen,
I always seem to read your posts when I have a cold, or when something has happened to upset me. I will be sitting here, feeling sorry for myself, and then I read what you are going through, and I pick myself up, shake myself off, and suck it up. Thank you. You are the most incredible human being. I wish I could take some of your pain away. I wish there was a way that I could make your day a little brighter, make you smile. I wish I could give you a big hug.
XOXO

Sherry
Reply rhonda R
6:03 PM on October 14, 2010 
Dearest. JeN,
You are always an inspiration and the struggle seems to never give you a break! Still under all these burdens your light and life are an inspiration to all of us crazy sexy cancer chicks to press on and love... And live in each moment. you are not alone but i am sure it can be lonely. we are with you in each ray of sunshine, each drop of rain, and every snowflake.

lots of love,
rhonda from texas
Reply rhonda R
5:59 PM on October 14, 2010 
Dearest. JeN,
You are always an inspiration and the struggle seems to never give you a break! Still under all these burdens your light and life are an inspiration to all of us crazy sexy cancer chicks to press on and love... And live in each moment. you are not alone but i am sure it can be lonely. we are with you in each ray of sunshine, each drop of rain, and every snowflake.

lots of love,
rhonda from texas
Reply Anna
4:15 PM on October 14, 2010 
OMG! Jen, you truly are the strongest person I know! A true fighter! You've been through so much... a true inspiration to many, including me! Sending hugs and good thoughts your way!!!! Keep kickin' major ass Jen!
Anna
Reply Anna
3:46 PM on October 14, 2010 
I think it was Ghandi who said, "Be the the LOVE you want to see in the world." Jen you are that love. Thank you for being such a warm hearted and honest friend. Your strength is immeasurable and it inspires me to be better, kinder, truer. You are leading by example. You are a beautiful person inside and out and I love you so. I'm praying for you to have some good news soon.
Reply Christine Gratton
3:33 PM on October 14, 2010 
Hi Jen!
I want you to know I think of you often, although I have not stayed in touch....I would love to come visit you and flood you with great stories...when you ar up for some company. Cameron is now almost 9. Kiana is 6, a mini-me. Work is the same, Barry and Linda still here! Your memory is here and we miss you alot! Your strength amazes me as you are continuously thrown bad news. Inside though, you are the same beautiful person. My cell number is 423-9413, I'd love to make a date with you! Big hugs, and please let me know when is best to visit...Christine
Reply Kendall Scott
3:26 PM on October 14, 2010 
Jen - You're doing exactly what you need to do - focusing on yourself and taking things one day at a time. I think about you every day and am always sending positive energy and love your way. The hits seem to keep coming, but you take it all with grace. What an amazing person you are! I wish I could take all your pain away.

Enjoy your heated blankets. Sounds nice and snuggly.

Love,
Kendall
Reply Kacey
8:30 AM on October 14, 2010 
You are a beautiful person, focus on what you need for your wellness. Keep smiling, it looks great on you!

In my thoughts and prayers:)
-kacey