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Hello.  I came across this blog, thankfully, being it's been so informative and helpful.  About a month ago my mom got diagnosed with Stage 3 Esphogeal Cancer.  It is at the junction of the esphogeas and stomach.  She is going to being Chemo/Radiation in a week.  She will get 2 chemo drugs for 5 days/ 24/7 and simultaneous radiation 2x a day for 2 weeks.  She will be admited to the Cleveland Clinic during the chemo treatment (mon-fri).  Anyhow, I am struggling with so many decisions.  I live in Arizona, my mom in Ohio.  I am so uncertain of what to expect and whether to leave, stay, risk losing my job, etc.  My mom comes before anything, but the doctors make it seem as though it's going to be ok.  Her program is as follows - chemo/radiation for 2 weeks, a month to 6 weeks off to rest and then surgery to remove a portion of her esphogeas and entire stomach, then recovery for 6- 8 weeks, then another 2 week round of chemo/radiation.  Anyhow, I have been with her since the diagnosis for apx. a month and my luck is my flight back home is a day before chemo begins.  My job isn't being very understanding.  Anyhow, everyone keeps telling me to go home until her surgery and then come be with her so I don't lose my job. If I get fired I wouldn't get unemployment and I have a 6 month old child, a mortgage, 3 dogs, no savings, no husband, etc.  But i'm so worried about leaving and then something happening to her that maybe the chemo brought about and then not being here for her and having regrets. Can anyone fill me in on complications and other risks that they have experience with during and following chemo. I am so beside myself with this news and and struggling with the decision to stay/leave is tearing me up inside.  Any feedback would be very much appreciated!!  And your prayers even more so!! 

 

On 8/20/2009 Mel74 wrote:

Hello.  I came across this blog, thankfully, being it's been so informative and helpful.  About a month ago my mom got diagnosed with Stage 3 Esphogeal Cancer.  It is at the junction of the esphogeas and stomach.  She is going to being Chemo/Radiation in a week.  She will get 2 chemo drugs for 5 days/ 24/7 and simultaneous radiation 2x a day for 2 weeks.  She will be admited to the Cleveland Clinic during the chemo treatment (mon-fri).  Anyhow, I am struggling with so many decisions.  I live in Arizona, my mom in Ohio.  I am so uncertain of what to expect and whether to leave, stay, risk losing my job, etc.  My mom comes before anything, but the doctors make it seem as though it's going to be ok.  Her program is as follows - chemo/radiation for 2 weeks, a month to 6 weeks off to rest and then surgery to remove a portion of her esphogeas and entire stomach, then recovery for 6- 8 weeks, then another 2 week round of chemo/radiation.  Anyhow, I have been with her since the diagnosis for apx. a month and my luck is my flight back home is a day before chemo begins.  My job isn't being very understanding.  Anyhow, everyone keeps telling me to go home until her surgery and then come be with her so I don't lose my job. If I get fired I wouldn't get unemployment and I have a 6 month old child, a mortgage, 3 dogs, no savings, no husband, etc.  But i'm so worried about leaving and then something happening to her that maybe the chemo brought about and then not being here for her and having regrets. Can anyone fill me in on complications and other risks that they have experience with during and following chemo. I am so beside myself with this news and and struggling with the decision to stay/leave is tearing me up inside.  Any feedback would be very much appreciated!!  And your prayers even more so!! 

hi mel

i know exactly how you feel.  i am a single parent too with two teenagers and a full time job.  we live on the other side of the world.  my mum was dx april 2008 and although we speak everyday (including when she was in hospital during bad side effects from the chemo and again after the op), and email most days, we havent been able to see each other.  she has now been told she has months and although money is very tight, we are heading back in october during half term and praying its not too late.

maybe you could discuss with yr mum if she would be willing to tranfer to a hospital close by to you.  if not it will have to suffice to see her when you can and support her when you can.

my heart goes out to you and yours

L

I won't lie...it's really tough but with that being said, Cleveland Clinic is excellent for EC and it sounds like they are planning to do her chemo in hospital. I would imagine if they finished with her treatment on a Friday, and she was not doing well enough, they would keep her. I can't say I've heard of too many people who have been in hospital for their treatment, so it sounds like they have a plan to be sure she will be cared for. With nurses in charge, you shouldn't face some of the issues we caregivers have had to learn to recognize and deal with when they come up. Would imagine she will have the best anti-emetics and all the other things that help pull someone through treatment.

You could try to convince her to treat in Arizona, but she really is in an excellent facility and she might want to be near her friends, etc. Doesn't sound like you have the option of staying with her through it all. If I had to make a choice, I would be more inclined to try to be there for her post surgically, but that kind of choice is very difficult, and it's easier said than done. Don't know what I would do if she had to go home from chemo and radiation everyday alone. It seems like you are being offered a way to be sure she is well cared for, as well as get back to your job and life for enough weeks to appease your employer briefly. Sounds like there are too many ties to leave and find work in Ohio.

You, your baby and your Mom are all in my prayers.

My Dad's treatment was done out-patient; he had chemotherapy only (3 different drugs).  One was 24X7 (he carried it around).  No radiation for him, but he handled the chemo great.  He stayed busy and he actually started feeling BETTER after his chemo started.  It wasn't until the last week of chemo that he started having a lot of pain/feeling bad so they took him off.  I think your Mom will be okay, especially in the hospital setting.  Does she have any other relatives or friends who can be there if she needs someone? 

After her surgery, she'll likely need someone to stay with her.  If you can, I would try to make arrangements to go back after surgery for 2 weeks.  Is there any way you can work remotely?  Does your employer off a family leave of absence?  Can you identify other family members to help you out?  You don't have to take this all on yourself; ask for help. 

 

 

I was dx with the exact same thing as your mother. I was admitted for 5 days 24/day with 5fu and cisplatin. while having 28 rads. rest for 3 weeks and back in the hospital for a second round. It was very difficult for me and I had my wife with me all the time. I developed pericarditis twice which was very painful to the point I was taken to the hospital twice and was admitted.  I also had several episodes of dehydration which also landed me at the hospital.

 

 3 weeks after that I had the surgery. It was hard and I had family take turns watching and helping me . I was 52 and in very good health to begin with. I'm not sure how old your mom is?

It would be nice if she could have this done near you and stay with you after. Not sure who els you have to help out.

Hope this helps. Repost if you need more info,

God bless and good luck

 

 

On 8/20/2009 Mel74 wrote:

Hello.  I came across this blog, thankfully, being it's been so informative and helpful.  About a month ago my mom got diagnosed with Stage 3 Esphogeal Cancer.  It is at the junction of the esphogeas and stomach.  She is going to being Chemo/Radiation in a week.  She will get 2 chemo drugs for 5 days/ 24/7 and simultaneous radiation 2x a day for 2 weeks.  She will be admited to the Cleveland Clinic during the chemo treatment (mon-fri).  Anyhow, I am struggling with so many decisions.  I live in Arizona, my mom in Ohio.  I am so uncertain of what to expect and whether to leave, stay, risk losing my job, etc.  My mom comes before anything, but the doctors make it seem as though it's going to be ok.  Her program is as follows - chemo/radiation for 2 weeks, a month to 6 weeks off to rest and then surgery to remove a portion of her esphogeas and entire stomach, then recovery for 6- 8 weeks, then another 2 week round of chemo/radiation.  Anyhow, I have been with her since the diagnosis for apx. a month and my luck is my flight back home is a day before chemo begins.  My job isn't being very understanding.  Anyhow, everyone keeps telling me to go home until her surgery and then come be with her so I don't lose my job. If I get fired I wouldn't get unemployment and I have a 6 month old child, a mortgage, 3 dogs, no savings, no husband, etc.  But i'm so worried about leaving and then something happening to her that maybe the chemo brought about and then not being here for her and having regrets. Can anyone fill me in on complications and other risks that they have experience with during and following chemo. I am so beside myself with this news and and struggling with the decision to stay/leave is tearing me up inside.  Any feedback would be very much appreciated!!  And your prayers even more so!! 

I had been diagnosed with Esophageal Cancer 9/08 Stage 2 and had a week of ChemoFU5 and 24/7 small portable chemo that week, 5-1/2 weeks of radiation followed by one more week of chemo; the chemo was not bad except for mouth sores which were really bad for one week; I also had a J Tube placed  in November before the second round of chemo so that I could keep up with nutrition which I am glad I did so that when I had my Esophajectomy in January it lessened the surgery time. I went to chemo and radiation by my self and really did not need any help. I would suggest being there for the surgery if your Mom does not have friends, church, etc. to visit and help; my friend was there every day during my ICU  stay to advocate for me and kept in touch with my brother out of state as it was a rough time, I developed fluid on my lungs, had to be reintubated, also had a leak in my left neck incision and stayed 17 days.  My brother lives in California but came back for a week when I was released from the hospital and by then I was able to move around my apartment by myself with walker at first then nothing. I was also blessed to have many friends and coworkers who helped. I was going to go to California for treatment but decided to stay here in Illinois as it was just too stressful for me to go somewhere when dealing with anxiety before surgery; also you can file for Family Leave at work if you are eligible and it can be intermittent, which means you take time off as you need it. My prayers are with you, it's a tough road at first but now I am feeling pretty much myself. Also, my leak eventually healed by itself, and I had homecare who helped teach me to pack the leak by myself.