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New here, watching dad suffer through EC too

Denise134
Posts: 6
Joined: Apr 2013

Hi everyone,

My name is Denise, and my 69 year old father was diagnosed back in July 2012. I am not sure why it took me so long to post, but everytime I would read the notes here, I just got sad and overwhelmed. So many stories sound just like mine. My dad started to have trouble swallowing, and next thing we knew, cancer. He has been so strong. My dad is a Kaiser memmber, It took a very long time to get anywhere with treatment, but he finally started in early fall post many tests and scans. We thought stage II, but never really got a direct assessment.  We were told it was only in the esophagus, but fairly advanced and deep. The plan was chemo/radiation, followed by surgery. He did 6 bi monthly rounds of horrible chemotherapy and radiation every day 6 weeks, never complaining once. He drove him self every day, as he lives in the foothills of the Sierras in CA and is 2 hours from the facility. I met him for every chemo treatment and many of his radiation appointments. He too, lost a ton of weight. He had almost a complete blockage. He dropped from 255 points to about 180 during chemo. Now, he is about 160. Back in the fall, I felt he was literally starving to detah and could only swallow soup broth and Ensure for nearly 8 weeks. He refused a feeding tube, and we tried a stent. The first failed, the second worked. Thankfully, he was able to start getting in some food, but I feel the damage caused by starving weakened him too much to be healthy enough for surgery.  Over the holidays he recovered from the chemo and radiation and in January, had a scan. Stents are in the right place, and the tumor was stalled. Not growing and shrunk quite a bit. We were planning for the big surgery to remove his esophagus in December, but he got an infection, and was having some very high blood pressue concerning the Dr about his ability to survive, so we postponed the Dec surgery and waited til Jan at his scan. Thank goodness we did wait! Just this Sunday, my dad got another PET scan. We are meeting with the onclolgist tomorrow am, who tells me there is new activity and a spot in my dads liver. It would have been a horrible mistake to put my dad through such a drastic surgery, only to find out he has cancer in his liver as well.   Most devastating aside from all of this, is that nearly all day, and night, my father has hiccups. Not just the kids we all get, but very painful ones. He takes vicodin minimally, but it does not really help anymore. He has troule sleeping due to this, and avoids eating thinking it will help. It wont help, becuase the tumor goes right through his diaphram. It is horrible, If he tried different pain meds, he gets constipated and that makes him even more miserable, so he wont take them anymore. His quality of life now is awful. I think about it all day every day and I am not able to sleep. I feel for all of you as well. This is a horrible and devastating thing to go through. I am a scientist- I work full time, have two heathly and beautiful children and a husband who I love but just doesnt understand how hard this is to go through. Coming here provides me the people that can understand and relate to how I feel. It just does not seem right for someone to suffer this much. He is a good, and strong person and now I am watching him wither away, and he says nothing but " I will be okay sweetheart". I am pretty sure this will take my dads life this year. I see him going down hill. I understand the mechanisms, cancer and the science behind it. I know this is not a going to be a good ending and I feel so guilty for thinking this way. I suppose I am amazed he has survuved this long. Best of luck to all of you and your families too.

 

paul61's picture
paul61
Posts: 1122
Joined: Apr 2010

Denise,

This form of cancer can certainly be cruel both for the patient and for the family watching the decline as it spreads. I am so sorry to read of your Dad’s suffering. But like you I am glad they discovered the spread of the cancer to other major organs before he was subjected to a major surgery.

As you and your Dad discuss future treatment options don’t be hesitant to call in hospice as soon as you decide to discontinue palliative therapy. Hospice can provide assistance in managing living conditions and are excellent at managing pain.

 My thoughts and prayers are with you and your Dad.

Best Regards,

Paul Adams

McCormick, South Carolina

DX 10/2009 T2N1M0  Stage IIB - Ivor Lewis Surgery  12/3/2009 - Post Surgery Chemotherapy 2/2009 – 6/2009

Cisplatin, Epirubicin, 5 FU - Three Year Survivor

Denise134
Posts: 6
Joined: Apr 2013

Thank you Paul. I am not sure my dad will be receptive to hospice. He has been very quiet. Does not talk about his fears, concerns, wishes or any feelings about any of this for that mater to me. Maybe becuase I am his daughter. Or, maybe I have not had the courage to directly bring it up. When he hears from his oncologist tomorow, maybe it will enable me to have a realistic discussion of where we are heading. I dont know how to do this. I dont want to have to do this.

Thaks for the response.

Denise

Daddyslove
Posts: 2
Joined: Apr 2013

Denise123, I understand what you are going through.

My 72 yo Dad was diagnosed with esophageal cancer Sept. '12.  He went through chemo (Epi/Oxaliplatin/5FU) no radiation and was scheduled for esophagectomy Jan. 13.  After chemo, scan showed tumor was much reduced and the stent fell out during treatment.   During surgery, surgeon found cancer had spread to the stomach.  The scan didn't pick up the stomach cancer, or maybe the tumor wasn't there when the scan was done.  

Resection is no longer recommended.  He finished another chemo (this time with radiation) carbotaxol two weeks ago.  Torward the end of treatment, he was so wounded from it.  He was admitted to the hospital because he hemoglobin was low, internal bleeding, sodium was low, massive swelling, mouth sores, and extreme fatigue.  He came out of the hospital only to be readmitted and even went to the ICU for a couple of days.  He's stablizing now, which normally would be good signs. 

But I am losing hope. I feel so guilty because I feel like I am abandoning him.  I am realistic about the stats of esophageal cancer survival rate, but it is always hope.  Now I feel like I am losing optimism, and that is so unfair to my Dad.  He is so strong and is fighting so solidly.  I feel like I am the coward because I am giving up on him. 

I don't think it is humane to make him go through another round of chemoradiation.  So, what next?  Watch an honorable, formerly happy man lose his dignity and die?  I have always been my Daddy's girl, which makes it particularly rough for me.  A hard part is to remain positive in front of him while my heart is breaking. 

I've been lurking in the boards for a while and first time posting.  I feel so alone in this journey, and am thankful to read about other's experiences.

Denise134
Posts: 6
Joined: Apr 2013

Hi there,

I absolutely understand how you feel! I am a realist and I know this horrible disease is going to take my dads life. On Thursday last week, I sat in the office with the incologist while they told my dad he has cancer in his liver now too. They said 6- 9 months max if he does nothing, and maybe a year to a hear and a half if he does more chemo. It was heartbreaking. I have never cried so hard.  They are putting him on a take home chemo pill- and he takes 4 in teh am, 3 at night for 14 days, a week off, repeat. I cant understand why this is happening. He is absolutely miserable, in pain, and now will prolong the inevitable and I feel so guilty for feeling thsi way, but I dont want to see him suffer anymore. This is just a nightmare. I am very sorry to hear about your dad too. I would be happy to talk to you in person as well- prayers for you and your family! 

 

Daddyslove
Posts: 2
Joined: Apr 2013

It's been calmer the past couple weeks since my Dad was transferred to a nursing home. I never thought my Dad would ever go to a nursing home, but he seems to like being there. There are other people around and he feels less lonely. My Mom is more sane and she is more emotionally stable too. he'll be doing a scan in 2 weeks. Miracles can happen, but I expect none of it.

How are you doing lately, Denise123? How are you coping with it? I was reading into grief and coping, and I find it so much easier to approach from a research perspective. It's so much easier taking yourself out of the context and find patterns in ways people behave. I guess that only lasts so long before you remember that it's your own Dad and you have to deal with it in this one instance. But at least it helps when things get morbid.

I am going to take more responsibility in helping him find more happiness. I don't know how yet, but it's a short-term goal. 

would love to talk offline. I'm not sure how to send private mail. Let's exchange emails if you're up for it.

 

 

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