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Husband diagnosed with possible EC

RevLee
Posts: 50
Joined: Jul 2009

My husband just had an endoscopy this morning. I was expecting the results to be an ulcer. I felt like someone dropped a house on me when the doctor lead us into a private room to tell us that he did not like what he saw during the procedure. He found a swollen lesion at the base of the esophagus above the stomach. He did biopsies and wants a CAT scan done as soon as possible to see if anything has spread outside to the lymph nodes, etc. My husband just had gall bladder laparoscopic removal in April and had lost weight because he was not eating due to the pain. He can swallow without a problem, but has pain when it gets to the bottom of his esophagus. He is a big man, but he has lost 60 lbs since April. He does eat but not as much as he used to. He did weigh 360 and is now 300. We are fortunate in that his CAT scan is scheduled for tomorrow. We are going to a local hospital for testing, but will probably go to Fox Chase CC once this is officially diagnosed.

How do I support him while I myself am falling apart? Mind you, on top of all this, I am an Episcopal Deacon. I am the one who is supposed to be strong.

mumphy's picture
mumphy
Posts: 486
Joined: Jun 2009

Hi,

My name is Kathy and my husband was diagnosed in May. The first thing you should do is to read William's story. It will take you step by step on what to expect if the biopsy does show cancer.

The second thing do is let yourself process everything and don't hold anything in, you have
to let it out, so cry when you need ,to yell if you have to, and pray all the time.

Things are going to be very difficult for you, but everyone here has or is going through exactly what you are. They have helped me alot just knowing that they really do know what
you are going through

GOD BLESS
Good Luck
Kathy

RevLee
Posts: 50
Joined: Jul 2009

Thanks for the kind help, Kathy.

John has his first appointment with the medical oncologist on the 22nd and the radiation oncologist on the 31st. We totally trust Fox Chase Cancer Center. They have a support group for EC patients that we will probably attend.

I will keep you posted.

God bless and thanks!

Lee

RevLee
Posts: 50
Joined: Jul 2009

William, thank you immensely for your comments. I was able to draw a lot of strenght from your words. God does not give people cancer as a punishment or a test. But HE is there for us when this happens in life. He is our strength, our support, our confider. Thanks to people like you, I was reminded of this.

Well, John has his first appointment at Fox Chase on Wednesday the 22nd. It is with the medical oncologist (chemo). He has his first appointment on the 31st with the radiation oncologist. So, we are on the road! Fox Chase has a support group for EC patients. We have signed up to go to their monthly meeting. John would feel better knowing what to expect, and so would I.

I will keep you abreast of what is happening and will probably have loads of questions for you!

Our niece graduated from the GC station in Cape May also. She is currently stationed on an Ice Cutter out of Washington State as the diesel mechanic.

Thanks and God Bless!

Lee

RevLee
Posts: 50
Joined: Jul 2009

I love reading your postings. They are so informative, compassionate and really help me a lot!

At our appointment on Friday (31st) with Dr. Kuritzky (the radiation oncologist) he told us that the PET scan seemed to show the same as the CT scan in that it appears to be confined to the esophagus and only the lymph nodes that are in the wall of the esophagus. The endoscopic ultrasound test on Monday is the final indicator. John will be having 5 weeks of radiation AND chemotherapy together Monday through Friday.
We got a call from Dr. Cheng's (medical oncologist) office on our voice mail. His original return appointment to Dr Cheng after all the test were done (for staging and treatment plan) was for August 19th. Since all the test will be done by this Monday, they moved the appointment up to August 12th at 12:15PM for blood work and 1:15 to see Dr. Cheng. The blood work is to check to be sure all is well before starting chemotherapy. I am pretty sure they will start chemo and radiation on Monday, August 17th since Dr. Kuritzky said they like to start everything on a Monday.
We still have the appointment with the surgeon, Dr. Scott, on the 13th. After he is done with chemo and radiation, they give the body a break for about 5 weeks. Then Dr. Scott will do the esophagectomy. John told Dr. Kuritzky that he does not care what stage he is, he will fight it all the same. He went to a class on chemotherapy so he could better understand what it was all about and what to expect. He is going to one on radiation therapy this Wednesday.
At least things are rolling now. I may be reaching out to people I know to help transport John for his treatments when it becomes necessary. I want to use as little sick/vacation time from work as possible now so that I can be home after his surgery.

What helped us immensely was going to the EC support group meeting at Fox Chase on the 24th. What wonderful, supportive people. One man had his done 13 years ago! What a testamony! There was a young woman there who just had the surgery 3 weeks ago. She wanted to find out more information. She was a little weak, but by golly, she was there.

Thanks and keep the prayers coming!

Lee

RevLee
Posts: 50
Joined: Jul 2009

It has been a while since I signed on. John just finished his 3rd week of chemo/radiation (out of 5 weeks). He is currently in a clinical trial (they call it protocol). He gets paclitaxel on Mondays. The first Monday he also had carboplatin and will have it again on the 21st. They then give him his 'bottle' which he wears 24/7 until Friday. This contains 5FU. The protocol is Zactima. He also has radiation everyday. He is taking neurontin. So far, he has had minimal side effects. The one main one he does have is fatigue. But he still gets around and about. However, tonight he is starting to feel a little uncomfortable in the area that is radiated. His radiation oncologist thought he would feel this last Friday but he didn't until tonight. They said he may start to get hit with other effects next week. He had one setback in that he had his stomach stapled back in the late 1980's. The surgeon does not know if he can use his stomach and may have to remove that also. But we met someone who also had her stomach removed and she is doing okay.

We are both reading a book called The Shack. John has found this to be very helpful.

Hope all is well with you!

Lee

mumphy's picture
mumphy
Posts: 486
Joined: Jun 2009

Hi Lee,

Sounds like John is righ on track and doing very well. We just finished up with chemo and
are resting for 6 weeks and then time for surgery.

Al will need to have radiation after the surgery along with a little more chemo to clean up
some of the lymphnodes that they may not be able to get during surgery.

Keep us posted on John's progress
God Bless

Kath

RevLee
Posts: 50
Joined: Jul 2009

Thanks for the reply. John is done chemo and has 1 more day of radiation since he missed on Labor Day when they were closed. He has 6-8 weeks off. This week he got hit with the side effects of a very sore tongue and a sore on his lip. He says he has more hair on his pillow in the morning than on his head! And he is very tired, but he did great considering the side effects he could have had. Now it is time for him to rest and rebuild.
Have they scheduled surgery for you yet?

Lee

RevLee
Posts: 50
Joined: Jul 2009

It seems that time flies by anymore. I thought I had just logged in and here it is 2 weeks!
God must surely bless you and has sent you as one of his own to help others! Your words are so comforting.
John got hit with the side effects this week, but still not as bad as he could have. He has a sore tongue and a sore on his lip, has lost hair and is very very tired. He got dehydrated yesterday and was infused with fluids today, his last day of chemo. He feels a lot better tonight. But they gave him, what he calls miracle mouthwash, to numb his mouth. And the radiation oncologist gave him a thick liquid to swallow before he eats to numb his esophagus so that he can eat without any irritation from the radiation. For pain he takes, maybe, 4 percocets all day. Amazing. But he knows he has to drink a lot of fluids. One more day of radiation on Monday then he is done. They gave him a certificate for completing his chemo in the Clinical Research Unit where he gets infused. All the nurses signed it. That is so nice.

I have been okay. I am on a medical leave of absence from my diaconal duties at church. However since the bishop is coming this Sunday I was asked to come back to serve. So I am. About 10 years ago I had a small thing removed from my face. It was small and it was not red or anything but it would form a scab then the scab would go away, so a dermatologist removed it. If she told me what it was, I do not remember. All was well except that I had a slight indentation where she removed it. It is about 1 inch from my nose and 2 inches from my eye. Well, last week, out of the blue, a red mark appeared around it. The next day it turned dark purple, then the skin sloughed off and I had an open wound that oozed. I went to my doc who said it could be basal cell carcinoma, so off to Fox Chase I went (I feel like I live there!). The dermatologist took a biopsy of it and I will know in a week of two what the heck it is. He said if you have to have cancer, that this is the best to get because it is very curable and easily treated. Not sure if that is what it is, but we shall see. Meanwhile it is a bit better but still sore and itchy. I keep it bandaged and cleaned daily until I hear from him.

But this is minor. I really admire the people in all the stories I read on this website. They all have amazing courage and are inspirations to everyone.

Lee

RevLee
Posts: 50
Joined: Jul 2009

Hi William!

I hope you have a safe and happy trip to Cape May. It is one of my favorite shore towns any time of the year.

John did really well the first 4 weeks of his 5 week chemo/radiation treatments. Everything hit him in the middle of his 5th and last week. On is last day of chemo, last Friday, he was very weak. They checked him out and his blood pressure was 58/37. It is a wonder he could move at all. They infused him with 2 bags of fluids with magnesium. He then got hit with diarrhea over the weekend. Yesterday was his last day of radiation and I was with him because he was still weak. Well, his blood pressure was a bit better - 76/48, but no where near what it should be. Again he had 2 bags of fluids. This whole process started at 7AM lasted to 2:15pm. They said it will take about 3 weeks for the effects of the radiation to wear off, and, hopefully, sooner for the chemo effects. He can't eat a lot because he has a very sore mouth. But, today he said his tongue feels a little better and he has been drinking a lot of water and is going to try some pasta for dinner. He definately looks better today.

You are right about viewing life differently after all this. Things that were so important before are not and the things that you seemed never to have time for suddenly become important. Materialistic things fall away and relationships take on a more important role in your life.

Thanks again for the kind words. I will try to remember to keep up on things!

Lee

K_ann1015's picture
K_ann1015
Posts: 555
Joined: Aug 2009

Lee,

I see so much of what my dad is going through with your husband. He was so healthy before this and is doing so well. But week 4 he started having nausea and throat pain probably from the radiation (according to Dr's at DUKE). He also was dehydrated from vomiting. He got the fluids as well for the first time. My mom said he looked SO MUCH better just form getting them. They postponed Tues chemo until Thursday---we hope he can do it... He only has a week and a half of chemo & radiation---hope he can do & handle it and then have a rest before re-staging.
I pray that your hubby does well in the days and weeks to come---keep posting--here you can find people going thru the same things that you are. we wish and PRAY for the best!
HANG IN THERE LEE!!!
Kim P

RevLee
Posts: 50
Joined: Jul 2009

Hope your Dad is doing better Kim. John, thankfully, never had any vomiting or nausea. What happened was that they day before his last chemo he got diarrhea. He got fluids last Friday, again on Monday and then again yesterday. He saw his medical oncologist, Dr. Cheng, yesterday and they are pleased with his blood test. His white cell count is going upwards again and all others are good. John asked him if he should continue taking the magnesium and the doc said no. It can cause diarrhea! He felt it was from the chemo and would stop soon. John just takes Immodium but the doc gave him a script for lomotil. Tonight he feels good. He has pain in his chest from the radiation but is managing that with 2 percacets every 6 hours. John was fortunate compared to a lot of others who have done the daily chemo/radiation therapy. Now he has 6-8 weeks to rebuild his strength for the surgery. He was also on a clinical trial of the drug Zactima. We can't speak highly enough for the entire staff at Fox Chase Cancer Center here in Philly.

Lee

LuvmyDad8's picture
LuvmyDad8
Posts: 8
Joined: Sep 2009

My Father was diagnosed on April 7,2009. The one thing my Mom said was that she had to push her feeling way down and just focus on taking care of my Dad. She had to this it all on her own because I live in NY and they are in California. My Dad lost his battle 3 1/2 weeks after being diagnosed. We caught his way too late. You need to be strong. I know that it is different for me than it is for you. I am talking about my Father and you are talking about your spouse. But I am here. You need to have someone to talk to about what you are feeling. My Mom kept it to herself until my Dad was sleeping and because she did this mostly at night, she didn't get much sleep and had no one to talk to. I am her for you and you and your family are in my thoughts and prayers. Take care of yourself, so you can keep up your strength. You will need it and he will need you.

K_ann1015's picture
K_ann1015
Posts: 555
Joined: Aug 2009

Hi-- I am still kind of new at this site---and I don't think I realized we both were with DADs with Esophageal cancer.... We are from upstate NY, but I am in Louisville KY and my parents are at Duke Cancer Ctr in NC. Not quite as far as you all were... I am so sorry for your loss--I know how hard it is to be far away..even though you are so much further away. My mom is being so strong---but sometimes I think she is hiding a lot of her fears and feelings from us kids---and I don't think she really shares them with anyone?? They have been so healthy, so this is all so new..

We all know our parents (& ourselves) have to pass on, but I was shocked at my dads stage 3--probably 4 DX! HE is a volunteer firefighter, active volunteer and a "fixer" of all that is broken! My siblings and I just were not expecting this--as were they! For you--3 1/2 weeks must have been even more shocking. I wish this all wouldn't have to be so hard on families and patients--it just makes us realize how much we take for granted...

I will need to touch base with you as time goes on..

LuvmyDad8's picture
LuvmyDad8
Posts: 8
Joined: Sep 2009

Thank you so much for your message. Today is my first day on this site. I thought I was doing better until last night. I cried until 1 am and I just couldn't stop. That is when I realized, I just can't do this on my own. I have a really hard time talking to my Boyfriend and my friends about what I am feeling and going through. Not that they wouldn't listen and haven't tried to be supportive, but none of them really understand and I don't want to burden any other them with all my crying and depression stuff, ya know. It is nice to be able to talk (or post) my feelings here and know that the people who are reading can totally understand. Again, Thank You and I would love to chat with you more. You and your family are in my thoughts.

K_ann1015's picture
K_ann1015
Posts: 555
Joined: Aug 2009

Oh--forgot to say--LOVE your screen name...touches my heart

emg09
Posts: 252
Joined: Mar 2009

This is the best site for you to be on. Everyone is so supportive. I know it's hard trying to keep your feelings in. I dealing with that too. I'm married to wonderful guy and I have 2 sons. I'm also an only child. Thankfully I do live near my parents, about 20 minutes away, but his treatment is 6 hours away. So, I rely on my mom passing on the correct information. It's been a hard road to travel, but we are managing. It's also a lonely road. I'm the rock for my parents, which as been so difficult. I'm always the positive one and the demanding one at the same time. It's such a tough thing to do. I also feel like the parent to them as well. It's an emotional rollercoaster that I want to get off of most of the time. I hide my emotions from my sons most of the time as well. They know their grandpa is really sick, but I don't want the worrying non stop and seeing me upset worries them. They are 13 and 9. It's over whelming most of the time, but I feel better reading the posts and I just love the support I get from everyone here.

Take care and come here for support as often as you need!!
Hugs!!!
Erika

K_ann1015's picture
K_ann1015
Posts: 555
Joined: Aug 2009

Erika, I know what you mean about not wanting the kids to worry to much...I have 4, 17,14,11,(almost)9. I haven't gotten weepy in front of them, but it is a challenge. I think this site is helpful to be able to "talk" and share---because even good friends don't really want to talk about cancer and stress all the time! So here we can talk about it and not offend anyone--but just offer each other support.. My dad is having a couple of rough days all of a sudden--- hope/pray it gets better.
prayers for you dad to do well! (and mom too)

Kim

emg09
Posts: 252
Joined: Mar 2009

I would be at a lost without this site!! I hope your dad is feeling better when he wakes up on this nice crisp morning and a new month!! I'm really praying for some good news today. My parents are back in the Drs. office today and my dad get's more chemo. Wow, you have your hands full with all those kids!! My 2 exhaust me, so I don't know how you do it!! :+) I'm hoping and praying everyone gets some good news soon!!

Erika

RevLee
Posts: 50
Joined: Jul 2009

Thanks to all who replied. I accidentally posted a message 3 times and I am having one heck of a time trying to delete the other 2. Any suggestions?

RevLee
Posts: 50
Joined: Jul 2009

Thanks for the kind words! I am sorry for your loss. I lost my mother to breast cancer in 1989. Still miss her daily.
I focus on John as does my family as a whole. He is first and primary right now. He is not a demanding person and he is a fighter. You know what it is like to lose a parent, as did I. But it is tough to see your spouse go through this. I am fortunate in that I work for a Christian organization that helps adjudicated young men. The staff there are very pastoral. But I will definitely keep you posted. I was just diagnosed with basal cell carcinoma for a lesion on my cheek that appeared out of no where 2 weeks ago. I have to see my doc’s associate who does MOHS surgery. I know it is not serious, but it is not something I need right now.
Your Mom is a tough woman. I agree with you in that you need to talk to someone. I am glad you will be around to hear me!!
Thanks,

Lee

RevLee
Posts: 50
Joined: Jul 2009

Still trying to figure out how to delete a posting!

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