Now, he Wants another oncology consult

[Cellar Door]

Seems like we were at -1 last week, and then Monday morning we were sitting here talking about life and he asked me if there was any way that I thought he was misdiagnosed. We talked about the research and that he has indeed outlived the average time for a SCLC diagnosis.He asked me if I thought given the test results (biopsies, scans) that he did indeed have cancer at all. Had I ever seen a case of spontaneous healing of cancer, etc.

Monday morning, his pain has gone up significantly and with it, the morphine IV. Hospice doc and nurse come here on Monday morning, he came into the kitchen for the discussion and sat down and asked the hospice doc about getting a third opinion. His reasoning is he has outlived the prognosis time. Logical question....

In other words... we went from last week wanting to just renew our vows, keep things comfortable and my moving on...

The hospice doc called and made an appt from our phone for a re-evaluation. This is to happen on Sept 19th. With that timing.... we will again be back in chemo around the first of October, just where we were last year at that time.

Then, the radical idea that I am supposed to go back to work asap. He can't stand up unassisted, I had to feed him part of his breakfast yesterday.

I'm sorry..... but is this a complete 180 from my last post or am I bonkers?

He woke up Tuesday having had dreaming about getting a job and how good it felt. He first suggested that I contact my boss and ask about the possibility of working at home for less money an hour. This to me was agreeable. Later that same morning, he was going to have me drop him off at his sister's house while I work and then I could go back full time.

I called my boss this morning and asked about getting back to work at the office and he is going to get materials together to send to me so I can catch up here at home.

Later Tues.... he said his voice is gone totally... which means he cannot be left alone even with a phone bc he cannot communicate. He started talking about the feasibility of my going back to work.... after I called my boss. Now I will appear the fool if I don't follow through.

Dropping him off at his sister's also makes oxygen is of issue. I would need to have a liquid oxygen tank installed at his sister's house and the nurse visits I would not be around for.

It simply does not make logistical sense. Nor does it make me comfortable for him to be in the lap of his mother (who stays with his sister when she is in town). No need for that malevolent woman to have more time with him than I do.

So.... the world has changed again. I am lost... suddenly nothing is the same.

In my heart, I know that he does not want to give up. I know he wants our life to continue. I know he may be still in denial or in fear of what the afterlife holds. Knowing his spirit it is most likely "hope springs eternal".

It should settle down, but sheesh...

Today, Thursday: I run out to the bank, come back and he asks me to come lie with him. "I am spent, honey, I can't deal much longer. I can't chew (bad teeth from chemo). I cannot see to surf the web or write email, I cannot even whisper long enough to answer and be heard."

I asked him, "So, the being at your end is more about quality of life?"

"First, to have quality of life.... one must *have* a life. I no longer do", he replied.

So, right now not sure if we are going to get the re-staging workup or if he is going to chicken out on that.

All I know is that I wish him peace. Asked again about renewing our vows (to get a chaplain here for the help Tom needs now). He told me we will talk about it in the next few days.

Right now.... I have no idea where his feelings lie: back to chemo? let it go its natural course route.

I need terra firma now more than ever.

More as I have time to do it. My head is just spinning. Hard to tell what is going to go on in the next few days.

You guys really do understand and it has made a world of difference. I thank you all.

[ma's kid]

Oh gosh, I really don't even know you...I am so new here but my heart is just breaking for you and your husband. I don't have any solutions and not even one suggestion. Just wish I could reach out and hold you both and give you some measure of comfort.

I know someone from here will post some really helpful suggestions...and I do hope they hurry. I am lighting a candle for you just as soon as I hit submit.

Please, please take care of YOU, ok...holding you both in my prayers and close to my heart.

Libby

[Ann]

It sounds like things are really turned upside down for you right now. It sounds like he is having a hard time "accepting" what he seemed to have "accepted" so well a few days ago. Is Hospice still helping you since he is now requesting a third opinion? If you don't support him in his decision to seek another opinion you may feel really guilty at some time about your decision. Right now, I would just try and let him make as many judgement calls as he possibly can. You see him every day and can judge if it's him or the meds talking. So sorry to hear that the pain level has increased. I know how hard it can be to juggle a job and be a caregiver...been thee and done that! I'll swear, your MIL and my FIL must somehow be related!!! I'm saying prayers and sending lots of hugs your way! Please remember to take care of yourself right now!

[Cellar Door]

Hospice still helping you since he is now requesting a third opinion?

Yes... the doc was here when he made the call to the oncologist directly, physician to physician. If he does consent to treatment, we have to retract our Hospice requests and we have no other source of insurance right now other than Medicare (disability).So we will have an IV but no morphine, no meds paid for period. *That* is an issue of concern to us both.

That is why I am seeking out even a few hours at work a week if I can have someone come and stay with him for the hours he usually sleeps during the morning. He dreads being alone here, yet I am the only soul he wants to care for him. He gets scared without me, he has said that many times. It would be easier on him to sleep through my absence, is my thinking and he agrees.

I hate to go back; memories are being created every moment we are together. Ones that will serve as reassurance that he indeed had a "good death" as harsh as that sounds. Peaceful, as pain free as possible, with all the love and care I can give.

If you don't support him in his decision to seek another opinion you may feel really guilty at some time about your decision. Right now, I would just try and let him make as many judgement calls as he possibly can. You see him every day and can judge if it's him or the meds talking.

After I wrapped my head around it a bit longer I started to live it hour by hour, and now day-by-day. My husband is bipolar and he does stuff like this (the 180 turns in all his decisions). He is a bit manic currently and admits it openly.

I can deal with the consult. I want him to see what they can or cannot do and know for sure before he closes his eyes for the last time. That is the whole idea behind the 3rd opinion decision. It's logical and understandable to want to know for sure. His presentation when first diagnosed was highly irregular, and the hospice doc said to me privately it could be small cell that started in the lymphatic system and not the lung.

We discussed the immunophenotypes from his biopsy last year and two of the three favor a neuroendocrine type of metastasis. None is apparent to us using the tools available at the bedside, our ears, eyes and hands to assess his frail frame.

Only way we *will* know is if we get labs and scans. I just don't want to watch my husband die of cancer while enduring the agony that chemo was for him. This time, it would be a frail man fighting chemo, something I saw so very much of when I worked hematology oncology (leukemias, lymphomas mostly).

Off topic recommendation: if you have never seen "Wit"(http://us.imdb.com/title/tt0243664/plotsummary) with Emma Thompson.... get it and watch it. I own it. It comes in on how I am viewing this.

But all of this worry is putting the cart before the horse. I think I have adjusted to the idea and settled down a great deal. Sleep has been better and I am far less exhausted and frustrated as I've been.

Yesterday afternoon, he had napped for about 4 hours and woke up and smiled as he looked at me. He motioned for me to come lie next to him in the big recliner that has become his round-the-clock home.

I did as he asked, we joked for a minute.. had a couple of great kisses and he said, "I miss you even when I sleep". Told me he could not cough anymore, it hurt too much and he feels something like it's "ripping" inside when he does. From his description and location of tenderness... most likely his liver.

He gave me the most loving look and said "I am done.. I can't do this anymore. I am just spent".

I got a very good new report on the growth of the company I working with. Emailed from the boss, an amazing guy himself.

I read it to my husband and he, out of breath and sleepy... told me get a paper and pencil.

He started dictating a letter to me. It was a letter to send to my boss to congratulate him on the growth this news is going to bring. Told me to "People need a bit of humor, and acheivements need to be recognized, remember that. Go and get a Shoebox Hallmark card.. simple, funny card like for a newborn baby sorta thing. You write and sign that letter inside and mail it to him."

I asked, "why not email it?".

A deep, sharp stare came at me from his suede blue eyes, "Because that card is concrete, is handwritten, it will be around for a long time. A personal touch is always well-received and remembered".

How tragic the loss of this man's intellect and business sense. He so is living vicariously through me, and with his help I could give us a very good living.

I hope I remember all the little things he has said.. I have started writing down his responses to seeing me frustrated, indecisive, etc with the new "paid geek" job. I am reveling in it and he knows it. It's hard to watch the roadmap we had planned for our lives fade into a mirage.

We both feel that way about us as a team, the potential we have. But neither of us talks about it. We don't need to; we think that much alike.

Today is a good day so far. I had a great breakfast of kisses and hugs. It's been a long time since we cuddled in that chair. We loved it so. It hurts him now.

When a hug hurts is simply cruel.

Good thing kisses do not

Thanks for the prayers all of you.

[shineladysue]

What I have to say won't help you. I have no advice for you. I just need to tell you that you are in my prayers. God Bless you both...

Love and Prayers,

Sue

[Don M]

You and your husband have my continued prayers.

Don M

[Jyoung20]

I am so overwhelmed just by reading your post. I can only imagine what you and your hubby are going through now. My prayers are with you!

Jamie

[nancy c]

I feel so bad for you. He is in denial along with facing the death he has coming upon him. It sounds so much like what my Mike went thru. He told me he knew he was dying, but in the same breathe asked if maybe his cancer could be removed surgically. This was after, 19 months of treatment, and being told intially that he was "inoperable". God bless your husband. Don't go far--stay at home with him. My dear Mike died at home 90 minutes after I was at work. He was with his son though.But I do wish I was with him.I never dreamed he would die that "day". It hurts so much to lose someone. Life is too short, and unfair. God bless you dear lady. Wishing you loads of love and peace. Nancy C

[Maryanne]

Wow, you certainly poured your heart out and mine aches for you.

I pray for peace for your husband and contiued strength to you.

This is so hard for you to face and I wish I could do something to take some of that burden off your shoulders.

I feel so helpless.

Maryanne

[Ann]

First, let me tell you how relieved I am to hear that you have been getting some sleep and are a bit more settled and relaxed. Like Nancy's Mike, my Dennis seemed to never stop thinking about ways to beat the cancer that was raging inside his body. The very last time that he stood on his own two feet, he asked if we were going to Orlando for chemo. That was two days before he died. He had wanted to get out of bed and the Hospice nurse and I had lifted him out of bed to try and satisfy him. I merely told him that we weren't going that day but we would go again as soon as he felt up to it. That answer seemed to satisfy him. Although you have to do everything possible to accomodate his wishes, you still have to be the practical and logical thinking one right now. Since you have no insurance, you certainly want to keep Hospice services to help you. If he is determined to get a 3rd opinion, possibly they would keep your case active until he receives that opinion. I think you should talk to the Hospice social worker, just as you have to us, and see what you can do. I'm keeping you both in my thoughts and prayers.

[lilyjohn]

When I read your first post I knew that I would have to answer you in some way. Work and the storm news have kept me pretty tied up and that was part of the delay but even more I want to be as honest and compasionate as I can be. Now I know what I want to say to you.

Like everyone else I read your words and my heart breaks. It breaks for you and it breaks for me and the memories that haunt me every day of my life. Like your husband my Johnny liked to snuggle and he loved the kisses. He often told me that he couldn't sleep without me either snuggleing him or holding his hand. Those are the painfull sweet memories and they are so important.

My best advice to you is to make as many of those memories as you can while you can. They may be painfull too later but they are what will get you through some of the hardest days of your life. Those sweet painfull memories can block out the bad ones that are sure to come or at least take the edge off of them. It has been nearly three years sense my Johnny left this world and I still use those memories everyday just to survive. The bad memories haunt me but those sweet memories sustain me even tho they come with their own pain.

I would advise anyone not just those facing cancer but everyone to make all of those memories that you can. Say I love you a thousand times a day. Pay note to the sparkle in his eye when he looks at you. Take the time to touch hands and hug and kiss. Share those special little jokes that no one else could possibly understand. One of my biggest regrets is that just a few nights before Johnny died he wanted me to lay with him and snuggle. He was having a very bad reaction to a medication. I let myself be intemidated by the hospital staff so I didn't honor his request. It could have calmed him down and it may have made a difference but I didn't do what he wanted and I will never stop regretting that.

We all have so many regrets and so many "what ifs" but the biggest regrets will always be what we didn't do or say not what we did. So hold on to him anyway you can. If he is still hopefull support him all the way. There is nothing worse than seeing someone you love robbed of hope. Not because they gave up but because everyone else did. May God hold both of you in his hand and give you many more memories to hold to your heart until you are together again where there will be no pain or fear or heartache. Lillian

[Cellar Door]

Hello all...

I had to come home to feed the cats and thought I would drop a line. Seems the ultra-modern hospital here hasn't caught up with the idea of web access for ppl in the hospital.

We had to go in on Tuesday... long story, but I started writing it down the old fashioned way (with a pen ).

Went in for a PICC line and for pain control.

Going back to take him out for a smoke and more cuddles. He has been kissing me and telling me how much he loves me in front of the nurses, docs.... and even when we are alone. I have a cot next to his bed and this is the first i have been home.

We are coming home (hopefully) tomorrow and I will catch up with all of you.

Thank you for all your prayers and kind words.

My angel awaits....

[nancy c]

I am glad he is getting so pain relief. kiss him back and hug him, and tell him you love him too. Time is so precious. God bless you both,Nancy C

[shineladysue]

Just wanted to say that you are both in my thoughts and prayers.

Love,

Sue