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Hi Ellen, thank you and welcome to the board. I didn’t mean to discourage you when I spoke of my husband. Everyone is so different and there is always hope. Barry had a huge disadvantage from the start because he had such a large tumor and it was located so close to the heart. Had it not been for that, perhaps we would’ve had a much different outcome, definitely a longer timeframe, so there may be something more they can do for your dad that they couldn’t for my husband.
It’s been a little over three weeks now. Our kids keep me going and my family has also been great about helping to keep me busy. I signed up today for Relay For Life – it felt good to know I’ll be a part of something that could help others like my husband.
Thanks everyone and God bless,
Just checking in to say that I’m doing OK, as in, I’m at least not crying every minute and I’m focusing on keeping my kids busy and happy, which in turn helps me as everyone said it would.
With each passing day, I remind myself over and over that had his life been prolonged, it would have been prolonged misery. He felt terrible. He could hardly get out of bed. What he wanted was his life before cancer, not something that, at best, was merely an existence. He feared what was to come… that he would continue to get worse, have even more pain, and perhaps even reach a point where he didn’t know any of us. He did not want that and God spared him that. I know that deep down, underneath all the grief, I realize all of these things and that realization will comfort me one day.
His service was beautiful, and we were fortunate enough to have had conversations about what he wanted, so I was able to honor all of those requests. If there is any positive to knowing your time is short, it gives you the chance to discuss these things, and say everything you need and want to say. I just wish I had said more “that day,” but I’m sure everyone feels that way. If only I’d known…
I’m so blessed to have wonderful family and friends and the outpouring of care and compassion has been beyond what I’d ever imagined. And I’m so thankful for this board too. Many have lost loved ones, but everyone here has lost or is dealing with the dreaded CC, which gives us an even more meaningful bond. Thank you for lifting me and my children up during this difficult time.
I don’t know how so many have gotten through this. My grief and despair run so deep, and yesterday was simply awful, making arrangements, purchasing a plot, having his clothes returned to me. His family starts arriving today and I know I need to be strong but I can’t stop crying.
A lady from my church came by last night and gave me all of these scriptures about widows, and kept telling me how much the Lord loves and cares for me and I have to say I felt no comfort from that at all. I think it is too raw and too soon for me to hear that, and all I want to talk about is my husband – not God. And kind-hearted people keep calling and wanting specifics about how much food to bring and when – I do appreciate them and know they’re doing something wonderful for us, but they sound so cheery and it forces me to sound cheery back, while only reminding me even more that he’s gone.
Anyway, please pray that I’ll have the strength to get through this, to pull it together before my kids come back home today (they’ve been with grandparents). I think I must have been in some sort of denial phase these past 4 months, believing he was going to get better, or at least that it would never happen this fast, because it has hit me as if it were totally and completely unexpected.
Thanks for lettting me vent,
That was basically the same for my husband. He did 4 rounds of Gemzar/Cisplatin totaling 8 treatments, over a period of 3 months. They did 2 CT scans during that time, and both times, the largest tumor grew a centimeter, while all the smaller ones were pretty much status quo.
Since he feels so bad, and chemo only made him feel worse, the doctor thought discontinuing it would be the best thing. I asked if there was any other treatment he believed might work, and he very frankly told me no.
Hopsice came Friday and they were really wonderful. They got an oxygen tank and wheelchair out to our house the same day. My husband has pericardial effusion – probably due to the largest tumor (11 cm) and he’s having a lot of chest pain and shortness of breath, so those things were a godsend and something never suggested by the doctor. So I can see hospice is going to be a great resource to have.
Thanks everyone for your thoughtful replies. The cancer treatment center was on top of everything and put in the referral yesterday. Hospice contacted us within hours and is coming out tomorrow morning. I am hoping with their expertise, and no chemotherapy, he will have that much-needed period of time where he feels better. He’s been pretty much bed-ridden since all of this started in November.
Blessings to all,
Hi Nancy, yes I think not having a blockage eliminates many potential complications with the stent placement, not to mention the additional symptoms that come with it, so in that regard we have much to be thankful for.
We just upp’ed his Fentanyl patch from 50 mcg to 75, which we’ll start this evening. 50 seemed to work pretty well the 1st day but was wearing off within 48 hours, so hopefully 75 will be the magic number. For nausea, Promethazine Hydrochloride did wonders. But he’s reluctant to take it because it knocks him out cold.
I’ll be praying for you and your husband too. Hate to hear that you’re going through the same thing.
Thanks everyone… I couldn’t get him in to the doctor before the weekend, but they are going to go ahead and do his labs on Monday when he goes in for the CT scan. Fortunately, the anti-nausea medication worked very well, no more vomiting since Wednesday afternoon. It was Promethazine Hydrochloride and I think – from what I read – that is probably what knocked him out, too.
We’re going to ask about Oxycontin, or see if they should increase the dosage of the Fentanyl patch. I think it is working at least a little bit, as his pain starts to really kick in once we near that 72-hour mark. It makes him almost instantly dizzy, and that could account for the nausea.
It’s like trying to connect not clearly numbered dots, eh?
Thanks again everyone for just listening, and prayers to you in your own situations.
Been busy for a few days but just wanted to say thank you Darla for sharing your story. In our case, we moved to be closer to family so it was definitely a blessing – that would have been tough if you’d moved out of state with no one – it’s tough even when you have the support of everyone! And I am very sorry about your husband.
Lainy, I like your pros/cons suggestion and will do that. Have an appointment this Saturday with an advisor and am going to look into something as well – in the meantime, just enjoying my husband’s “off chemo” week.
Thank you guys again. Margaret, I am so glad you have no regrets. Material things seem so irrelevant (and downright burdensome) when cancer strikes.
cathy, my husband definitely understands. When I asked him what he thought we should do, he said ‘If the situation were reversed, I’d get rid of it in a heartbeat’ lol. We built it in ignorant bliss, not knowing he’d be diagnosed just 9 months later. He feels more guilt that he can’t help out with our 2, uh…. VERY energetic kids.
Hollandg and jathy,
First of all, I am so glad to hear from 2 survivors. You give me hope. )
I have spoken with a financial advisor and attorney and I’m afraid we have no options as far as our lender working with us. We do not qualify for loan modification (which would have been IDEAL) because we purchased the home after January 2009, and forget the moratorium. They allow you to “skip” three payments, but you have to pay the late fees, take the credit hit, AND repay the three payments in one lump sum on the 4th month. What a deal! Our life insurance is not tied in with our mortgage so there’s no fear of losing that if we sell.
Honestly, I think my workload is more stressful than moving. Moving is high stress, but temporary. Working overtime to pay a mortgage is long-term, avoidable stress.
I have one other option I’m going to look into, as I would love to stay put if at all possible. In the meantime, I’m going to think it over – and pray hard about the situation before I do anything.
Thank you everyone again for the input. God bless,
Yes, we are in that 5-month waiting period right now but he was approved for SS disability and it will start in May. That will definitely be a huge help.
Thank you so much for weighing in, everyone. I’ve discussed this with a couple of friends who are not and have not gone through this, and it’s amazing how different the answers are. I can tell this comes from people who have been there and understand. We are in a pretty rural area and it may take a while to sell anyway, so I will probably seek to get things underway soon. Thank you again.
Thank you anp, and good luck to your father, too!
Nancy, he’s being treated at Clearview Cancer Institute, a.k.a. CCI, in Huntsville, AL. Fabulous oncologist and wonderful, caring support staff.
He’s rough today – had chemo on Monday and is in what I’ve come to recognize as that 2 to 3-day post chemo hell. Hopefully he’ll feel much better in a few days.
Thanks everyone. I did some googling but it only added to my confusion, so today I asked my primary care doc if she’d go over it with me and she was glad to. Unfortunately, what she said wasn’t very positive, but at least it’s understandable now.