Coping Poorly--need advice

My 54 yo husband is moving towards a possible esophagectomy at UPMC (Dr. Luketich).  His recent PET scan showed cancer activity in three lymph nodes and although the orig. GI junction tumor has shrubk, active ca cells are still evident.  He is having an EUS next Weds. to determine if the extent of active disease not detected by PET precludes resection.  We have seven children-three under 14 still at home.  I am on FMLA but still have to work several days per week for insuraance and financial reasons.  I also have an 84 yr old mother who is self-sufficient but needs some assistance. Everyone in my family has overwhelming and competing needs--especially our four year old who's structure has been non-existant.  We are always going away for more medical appointments--many overnight.  I have built somewhat of a support network but still feel so overwhelmed.  This is unusual for me --as a medical social worker, I am usually pretty resourceful.  How have you all managed the stress, limbo, grief? Could you concentrate at work?  My husband Ed was diagnosed March 18th and we're three weeks out from chemo and radiation. Betsy 

Hi, I heard Dr Luketich is the best so you are in good hands. My father was diagonaised in Dec 2011, he has had his treatment (70years old) chemoradiation two months back...the doctors here said inoperatable since it has spread to the lymph nodes. We went to another city for treatment the doctor there said they can operate .. gave us 2 choice surgery or just chemoradiation, we choose chemoradiation ..and we asked him which is better he also said chemoradiation because of two things ..1. He's 70 years old and 2. It's metastatic ..so even if he had surgery they are not so sure it wont reoccur.

Post two months after chemoradiation we had a Pet scan which didnt look so good ...we went to another cancer center and saw a new doctor ...he asked us why we did Pet scan (the earlier doctor who treated us for radiation ask us to do it in 2 months time) and not to do it again since according to him Pet scan doesnt help with Ec patients. He just asked how my Dad is feeling (he's feeling alright no major problem just numbness in feet due to taxol and mucus) he's fine so he just said to come and see him after two month and if we do have a problem before that to see him then. He didnt really explain about the Pet scan (doctors in India dont really explain things to their patients) we know its not good but we are no doctors and a few we asked said not to worry so even we didnt force it we know there's a tumour somewhere and it could have been there even before his cancer who knows...

In the mean time we are doing a bit of alternate too..he started taking My Cummunity and Turkey Tail by Fungi Perfecti (which I think is helping him but it's not a month yet so hard to say) also tumeric juice and papaya leaf tea/juice, coconut water everyday and just started on flax oil with cottage cheese once a day, Barlean's greens etc.

It was difficult at first I cried all the time but I pulled myself together and said to myself I am not going to let him die of cancer or atleast let me try my best ..so I started my research almost everyday and try to stay strong ..think positive.. there are so many survivors out there and pray to God he will give you strength and show you the way.

Hope everything works out ..do let us know how you are doing 

Will pray for you

God bless

Zoe

Hi Betsy,

I like you have a husband who is HER 2 + and has taken Herceptin for 6 months. Unfortunately, his primary tumour has grown from basically nothing to 6 x 6cm. He is a stage iv EC, incurable. We have not been offered surgery, unlike your Ed. Ask a lot of questions, what have been the successes with a stage iv?

Do keep posting on your journey. best to you and your family. Yes, this is very hard on the caregivers and feels overwhelming. Rely on your support when you can get it and be good to yourself.

I am so sorry. You certainly have your hands full.  Since some of your children are grown and out of the house, could you enlist their help?  Perhaps someone could move back home for a couple of months just to help  a little and be there for support.  If they cannot, then you may find other help who could help you with the young ones or even have a child or 2 for a couple of days at a time to give you a break.  You will have a difficult 4 - 6 weeks, but then things should ease up.  Remember there is always light at the end of the tunnel and your hubby will improve.    Even with lymph nodes involved, with today's chemo drugs that is not the problem it used to be.  God willing, they will get that too and in a couple of months your hubby will show very positive results.

You are in good hands at UPMC.  Best wishes as you go forward.

Betsi,

You are obviously a giving person already a medical social worker, and you have alot on your plate.

You may be coping better then you think. I found the social workers very helpful and wonderful people. Perhaps you can go into your own office and ask some peers, you need help.

Sounds like you have done alot for others and your family, so it good to have some family help where you can get them. 

I come from a medical family, but when my husband was diagnosed, its different. Try not to be to hard on yourself.

FOr me work was also needed at first, had to pay the bills and then there was some times I just had to be fully off. It was too much to have the work schedule and conversations in my head. My boss was better at helping me then I expected. So I also switch to part-time, as well as taking off 2 weeks then went back part-time . Then was able to do some backlog work so my presence wasn't so demanding or missed.

My school and parish were wonderful, setup a meal schedule dropped them off, and also had someone I could call each week for a grocery run. Actually they would call me, to see what I needed. Some moms throw in treats for the kids, which in the midst of all this, brought a smile to their faces.

Kids can be great, simple things can still make them happy.

Extra hugs for everybody, including you and your husband.

Keep going, you are in my prayers