Cellar Door

It has been over 2 years since the passing of my dear Tom. That long since I last posted here. Not sure who will remember me, but I felt this forum was owed this.... I have come back many times to read those posts and the kind responses of so many here. I read here when things were hard, and it lifed my spirits so. You have been in my thoughts, all those who leant such amazing support in the face of such chaos. I have thought so many times about coming here to post an update, but thought it self-absorbed and callous. But things seem to be going OK right now, so I thought it a good time to post. After Tom died in Sept 2005, I went back to work at the software company 2 weeks after, just like he told me to do. My mind wasn't ready, I was making mistakes in databases dealing with great deals of money, and I decided I needed to leave in December. My doctor encouraged me to take some time to 'rest up' and weigh my options. He really pushed for me to return to New York to live with my mother. Instead, I sat in our marital apartment, and rotted. My depression was overwhelming at times, financially I was in ruin. Then, in July of 2006, I got a phone call from my mother's best friend: my mother had a lump in her breast. Turns out my mother had this lump at about the same time as Tom was diagnosed with his SCLC. My mother chose not only to *not* tell me, but she neglected to pursue any assessment or treatment for the lump. No one knew anything, until she drove to Ohio for my husband's memorial service (eight months prior to this conversation). She had come with her best friend, sharing the 3 hour drive. It seems that during their visit, this lump in my mother's breast moved to the surface and became an open wound. In my *own house*, my mother would not tell me. I have been a nurse over 20 years..... after I drove 3 hours to see my mother, envisioning all sorts of terrifying images of what I was about to behold... it was not as bad as some I had seen. But I knew it was advanced; I was scared she was going to die. She was diagnosed with Stage IIIB infiltrating ductal breast carcinoma. I stayed with her for 3 weeks but had to return to Ohio. She had surgery, chemo and radiation. Final results: NED, woohoo. In this time of deep depression and financial suicide, a person I knew from an online support group became a great source of support and empathy. He, as Tom did, felt I needed desperately to leave Ohio to give myself a fresh start. He encouraged me to move... and offered me a place to stay. In late January of 2007, fate sort of decided things for me. I wasn't sure I wanted to move to the Midwest... I'm a New York girl to the core One day, I happened to be out running errands, and on the way home... my car was rear-ended and totalled, bc of a girl talking on a cell phone . Oddly enough, the cash value of my car was the exact total that I needed to get a truck and move west... within $50. It was an omen from God. I started telling ppl I was leaving Ohio, ppl came in droves to help me pack. I packed an entire 2 floor house in 4 days. This was meant to be. Fourteen hours we drove: me, Emma the Yellow Lab... Gilligan the cat in his carrier, and Mila the black cat who escaped her box and ran about the truck cabin the whole time. It was bitterly cold, but somehow I felt warm. Tom was with me... I felt the glow of his smile somewhere inside. It was the right decision to make. I have been here just over a year now. I have a job that I've dreamt of having for years... one Tom would have said suit my talents well. I am working for a Hospice: a not-for-profit Hospice, one like that which served he and I so well in our time of greatest need. I am in an administrative position, away from patient care. I think this is wise. I do get calls from those first finding out about this hell we know as "living with" cancer. I am often the first person a patient or family talks to after getting "the news". I remember making that phone call; it's invaluable in relating to those with whom I speak with daily. It makes me feel begin to feel whole to know I am now givng back the energy that I borrowed from the system during my Tom's illness. I can feel the warm glow of those amazing blue eyes warming my heart. I think he is proud; I feel he is at peace. I guess I feel I had to say something here, in this place, because without the support and innate understanding of those here..... oh good lord, how lonely I would have truly been. You helped me through the worst, you deserve to hear the fruits of your prayers and thoughts. You are all in my hearts, forever. Part of the fabric of this life. Thank you. Cellar Door

Nancy, Keep your head up, even a little. This is the most 'bitter' holiday season of my life. I can relate to everything you said in that scenario... except in my version, you are my sister-in-law, who lost my huband (her brother) but her husband as well (CNS lymphoma, 63). They died about 6 months apart. How my heart aches for her, and for you as well. She and Tom were best friends, I can only fathom the closeness you felt to your brother... When I would stress about an event...Tom always would cup my chin... and say. "If it has a beginning, it will have an end". Keep that in mind for the holidays. Enjoy as much as you can, but remember it will be over at some point and you will walk in your front door. I am proud you were able to even go. That in itself is showing your strength... Hugs, tissues... and a can of "Kid Be Gone".. Cellar Door

http://lchelp.org/community/viewtopic.php?t=16720 http://lchelp.org/community/viewtopic.php?t=17528 http://lchelp.org/community/viewtopic.php?t=17673 http://lchelp.org/community/viewtopic.php?t=17856 and lastly, http://lchelp.org/community/viewtopic.php?t=17887 My husband and I were separated for a period of time right before his diagnosis... he was bipolar and alcoholic. At this time two years ago, he had both under control. He wanted to save our marriage, the only one I had ever known. Thanksgiving recalled the situation to mind. We overcame mental illness, alcoholism, paranoia, his physical abuse.... and things were very good until... Just recollecting the elation I had this time 2 years ago. Nothing more. All the best.

Two years ago, my husband was living in another state with a woman he met online... I had already filed for an order of protection over a year earlier and filed for divorce. He called me the week of Thanksgiving, 16th month of our separation. We talked for 3 hours. He was sober... the crux of our marriage wars. Started talking about his coming back here. Told him if we got along, fine.. if not, hey take your apartment back and I will go back to NY.. no hard feelings. He agreed. He moved in last April, right after our divorce was final. I was scared to let him back despite his sobriety and mental state were under control. He was the man I married again. For some reason... during that time of negotiating a retry of our relationship.. my fears of him dissipated. During that time we emailed about his return... first thing I sent him were these lyrics: Barenaked Ladies Fans get ready I sent the lyrics as they had helped me heal... but the song is exactly how it went with us... I was blessed; he was Touched. We rocked. Grateful for my Tom more every day. mrsTOB aka Cellar Door

Thank you so much for thinking of me. Thank you to *everyone* who responded to my 'news'. I started back at work today.. he will be gone 2 weeks on Wednesday. Still in a state of emotional inertia. Cannot sleep more than 4 hours even with meds, stomach acting up, typical stuff. It will pass.. I know. My mother was here over the weekend she was more fabulous with me than I ever thought she could be. My sister sent me a card that was just so perfect: The amazing outpouring of caring from ppl has just been incredible. Not unsurprisingly, very little has come from his own family... save his father. I was referred to today as a 'widow' for the first time. Sent quite a chill up my spine. Will write more as I have time. Right now, I am gone 11 hours a day for work (Mon-Fri). I appreciate each and every one of you who reads these lines. You have brought me solace when no one else could listen... a true gift. Hugs, lots of 'em.

Thank all of you so very much. Hurts a lot today, so many calls and now invited to dinner at his sister's house. Not sure I will feel welcome, nor that I will be able to eat. I have been retching since yesterday afternoon. I was just around and thought I remembered him posting here. He did. Under the nick of Mercer. His one post can be found here http://lchelp.org/community/viewtopic.php?t=12820 Funny in reading that... the medical 'doctor' friend he is referring to is me. He always thought I should have been a doctor. Just strange to see his words. Maybe it will give you all a better picture of my sweet man. Heh, he lied a bit about his age, but I guess he is allowed Had a visit with the grief counselor today, I was OK for that. The crying is coming in spurts and very hard. I curl up with the dog and she licks my tears away. She is hurting too... keeping watch out the front window for her daddy's return. Reading his words gives me a warm feeling... I can hear him saying them in my ear as if it were happening right now. Be back around later. Thanks again... thank you all.

Today was a day like any other... We had something to eat and I went to put the dishes in the sink so we could walk to the bathroom. In the 45 seconds that it took... I came back and found him laying down on the chair. I said, "Baby, you hurting?" Nothing. It started to hit me. I started calling his name louder and louder. Suddenly, his head turned and he took a big gasp of air in. I ran an turned up the oxygen and came back. He did not breathe again. I climbed into the chair next to my sweet, precious husband. I put his arm around my waist and started to softly pray... the Our Father turned into the Hail Mary and I cried as I realized I couldn't remember the prayers. I reached in and got my cell phone and called Hospice to come. I then called his best friend. I called a mutual friend, and she came right from work to be here with me. It's all a blur from then until now. His pain is over, his struggle most valiant. Here is to Heaven's gain and this world's loss. To my Tom: Thank you for teaching me grace and poise. Thank you for your patience with me. I will never lose the sound of your voice in my ear. I will carry on, always with your words in my heart. As long as I live, you shall live in my every move, thought and word. Rest well my sweet, I will have so very much to tell you the next we meet. from The Prophet by Kahlil Gibran. Thank you all. I shall be back to post as time and emotion allow. Warm regards, Cellar Door

Emotional turmoil has pretty much ruled my life of late. Lots of dates, lots of key times in my life, I am blessed with a brain that has some nifty features that came with it. One such feature is a nearly photograpahic memory. I have a thing for numbers especially. Quick example: I fell out of a car when I was 3. I was not injured, I just rolled out onto the grass on the side of the road, we were not moving more than 15mph. It (the memory) starts with rolling on the ground with no effort, very odd sensation. I see grass and then sky and then the stop sign and corner of our street. There is a black car with a shiny silver hubcab, a black wheelwell. turning a corner, about 15 feet away. I see a red speck and black writing on the cap. I was about 8 or so. just learning to read well, bigger words, etc and I was able to tell my mother that the word that was on the hubcap I saw so long ago was "Ambassador". She thought I was joking with her, being a kid. But... it's exactly how my mind works. I digress. September 7th of 2004: My husband was officially diagnosed with SCLC via mediastinoscopy. October 4th, 2004: we started chemo. One day before his 53rd birthday. October 5th, 2004: we missed chemo... we were home vomiting and in pain from the retching. April 12th, 2005: my boyfriend (almost husband) of 6 years... Michael.. would have turned 37. July 27th, 1981: my Uncle Jim died of SCLC on at age 63: but seven days short of his 64th. It was a Monday.. 11:27 PM. I was listening to the Beatles "Birthday" on the patio, out watching the stars and quietly remembering him. The call came as I was seated on the concrete we had poured 10 years prior while making his patio. August 3rd, 2005: my uncle Jim would have been 88. August 28th, 1998: my Michael died at age 30. Heart attack in his sleep (related to sleep apnea). News of his death came to me via a message left on my answering machine. The message came from 178 miles away, from our old hometown. Incredulous I was, at least for a bit. I was coming home to call him and tell him I had just enrolled into a BSN program. It was something he had nagged me to do from our first months together in 1990... with these specific dates cycling... you see we arrive back at September 7th, 2004: diagnosis. For me: Events become memories.... memories become anniversaries. Anniversaries become rituals, RItuals often commemorate respect of some thing, or for someone. RItuals are by definition, repeated actions. As such, out of *respect* for those I have lost... remembering them inadvertently causes me to relive the events surrounding their deaths every year: a by-product of such an exacting (and seemingly selective) memory. Notice how these spontaneous recollections surrounding deaths are far more detailed than those of birthdays. Now that the 'anniversary' of the diagnosis has passed, I would like to think I will be fine for a while. Another date is imminent. Which one it will be is not up to me. Will it be his 54th birthday on October 5th? Or... will it be the day we ultimately lose the fight against SCLC? I am OK with the idea of his death. I have to be; it is inevitable. In the end: I would have considered no other way of dealing with this, I am proud and so grateful to my boss for granting me the opportunity to do the right thing morally. Being here for my husband (and he for me) is a rare and beautiful gift, We both have grown as individuals, lived a lot in the months since September 7th, 2004. More soon, just very tired.

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....

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. 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.

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.

Again, thank you all. Sorry that last post was less that smooth, I was just so upset and tired. I just found something I wrote earlier this week. It was written when I was having a crying fit after having dealt with him being difficult and my impatience. Just thought I would share.

Thank you, from the deepest part of my soul. Each and everyone who has responded here has made me feel truly embraced. Pat: thank you for the most elegant solution to cover 2 things at once: call the chaplain, have him do the renewal of vows and then just have him stay for coffee afterward and I could slip out of the room and they can talk about the spiritual aspects. Hoping for Mon or Tues. Pain is agonizing. Tears rolling down his cheeks at times. He been very conservative in his agreeing to go up on the pain meds because he wants to stay alert. Well, dinner with my husband's mother. Two days prior to her coming here, he asked her to make 2 of his favorite dishes. She showed up with nothing in hand, no apology... second time it has happened in the last 6 weeks. How can you deny your own child the food he is craving as he fights such a grizzly and tenacious disease?? Started talking to him about his "service" after he is cremated. This woman started the convo re: his memorial service. And she asked for more of the items in this house. She did not even wait for me to finish my meal before the old 'well, I hate to have to eat and run but...' Today she asked him on the phone for my wedding band back. She *gave* it to me when we got married. It belonged to his great-grandmother. Just *how* much does she think she is going to "take over" about his belongings. I am soo soo sick of seeing ppl circling like vultures. It makes me literally nauseous. Repulsive, indignant. He is on considerably more morphine. The throat pain/pressure from the tumor continues to be of issue. More to share... but have to run just now. My deepest gratitude to all of you. Thank you for the prayers and support.

I have heard that statement 3 times today from my husband. Showing decreased alertness, response time to questions can be up to 5 sec while he gets the breath together to say half a word or two and I play "guess the rest". Been having lots of wonderful pillow talk. What he wants for me, where I should be stronger... more confident of myself. Told me he wants to renew our vows if a priest will come to the house. Asked me what he could get me as a "farewell" gift. He wants me to write him a letter about our time together. About all of the good and bad. There was enough bad that we were apart for 16 months, divorced and remarried Apr 02 of this year. He married me twice. Only beginning to realize my good fortune in having this man in my life. We started talking during our divorce and ended up him moving from out-of-state back here with me only 12 days after our divorce was final. He has been angry and I have been burnout and frustrated for this last week or so, not been able to stop crying. Yesterday was another death anniversary for me. 7 years ago, my then 30 yr old boyfriend died in his sleep as the result of obstructive sleep apnea, something I had begged him to be treated for. Just two weeks prior, he had come to visit me to propose to me. I told him no, for reasons I gave before. I was trying to help him believe in himself more... have always sort of thought he died of a broken heart. We were together for over 6 years. Now that the anniversary of my Michael 7 yrs ago has started to fade, and my huband seems to be calmer since I have stopped crying. He did tell me that I am going to give myself a heart attack the way I am right now and he is scared *for* me. So, the anger is gone, we have gotten along well today, took him out with the dog for a ride this morning in the bright sun. He has been sleeping pretty much since then. Awakes for pain, and not much more.. I think he will slip into a uremic coma very soon... or whatever. For once... the science has left my mind and I struggle to be with him and talk to him just to absorb all that will be otherwise lost, forgotten about him. I am losing my mentor. I am losing my best coach and supporter. I am losing the mind that makes mine think *harder* about things. I am losing my debate partner. Said he knows he is going to hell, as well. Won't see a chaplain. Spirituality to him has always been more of a zen-like ideal, and I have never heard him reference neither Heaven or hell until today. A most dear friend made a 2 day trip to come and see me now. It has helped tremendously. I feel sane now rather than just freaked out. Now things are sobering. It's going to happen, and I have no idea, but I do have to deal with his mother tomorrow. It's a contest of who is being hurt the most to her.... not so much about losing a man as wonderful as her son. To MY mother: thank you for being so wonderful. Teaching me what love really means. I realize now how lucky I was growing up. Sort of numb at the moment. My angel beckons me to sleep. I am going to miss his doing that even... I am OK... I just want to hold him like a baby and rock him and make him not afraid. Just deeply introspective. Thanks for listening.

Lady: just wanted to say that I cam here to write about anger and a little more in caring for my husband. Your description is so the situation here for the last 2 weeks... It hurts a great deal. Know you are not alone. You are thought of.

hopeandstrength: indeed a good point about doctors and asking the right questions. Great time to be a nurse. I too am the only nurse in the family (my mother is the last of 11), but I am always glad to be of help. I have found being objective rather easy in most cases with the family, it's just totally different ground now with my husband. cindi: Your friend sounds a lot like me (not to flatter myself). I too have curled up with patients, held hands, slept overnight in a patient's room bc he could not sleep without me there (at the hospital).Her buying you that ticket.. it's one of those type of gestures: one from the heart. I hope you have a wonderful time. Fall54: Thank you very much, but the compliments belong to my mother who has been such a tremendous role model of strength, love and caring. Thank you... she is a hard act to follow up to. ~~~~ Not sure about methadone. He has a mood disorder and this seems to be aggravating a delusional/psychomotor agitation problem that I cannot be awake all the time to prevent him from falling. He has agreed to take some meds for right now and see if it helps. Has to write now to communicate, but still his reasoning was there and he understood my concerns. Just had to say "if you expect me to give you the best care, that includes being safe. When I am passed out exhausted, I cannot do that." Shook his head, agreed... Had some fun over the weekend (road trip, first in 3 months) will update how that went tomorrow perhaps. He is an angel. A sleeping angel, right now. Hugs to all, and I do feel at home. Glad I posted.

Thank you all for your heartfelt support. Comforting to see that I am not alone in this role. First time in over a month, we went about an nour in the car (90F sans A/C) to see some old friends today at a gathering. Many ppl there have known him for years. While it was good for him to see his friends and say his goodbyes... I saw the looks on the faces of these persons as he talked to them. As he has always been a handsome man of impeccable grooming, his appearance to them was in obvious sharp contrast. I cannot imagine what he was thinking as he was talking to them, seeing them with tears in their eyes. As always, he played it with grace and dignity, comforting *them*. We were gone about 4 hours total and when we got home, I could see his exhaustion. He has been sleeping about 9 hours now. Got the methadone in him so he won't wake up in agony. ~ Today, I played wife using nursing skills to facilitate his getting out into life. Today I paid witness as a wife, watching his 30lb lighter frame hug others and I could only see a skeleton. I tried very hard not to cry. Today, I am most proud to be his wife.... and glad to be a nurse. Tiring, but good day. ~ He reeks of the cancer again. I am alone here in caring for him. His family is distant; his only son estranged. My mother is inconsistent in her support (despite having cared for her husband who died of stomach cancer when she was 27 and he 29) and she lives 4 hours away. So, when there is precious little other support to be had, I return to the solace of medical knowledge. He recently told me that he is clinging to life bc he fears how I will be after he dies. He says he fights the pain to make sure I will be OK. I told him knowing his clinging to life through intolerable pain for that purpose was unnecessary and would ultimately cause me only more grief. True love is an amazing thing. We are at peace with one another; our deepest feelings and hopes shared. Regrets told, forgiveness given. After about 3 weeks of little food, more pain, paralysis... He asked me, "How long can I go on like this?" In my mind... I automatically start thinking of his vital signs, pulmonary edema, progressive paralysis.... and then I stopped. Ye olde "comprehensive assessment". While all that professional pathophysiology just kicked in: one truth remained. Each individual's presentation and course of illness will be ultimately unique. So, I stopped myself from thinking of the science... thought of those whom I had cared for while in Hospice. I said, "Go home, baby. I will be just fine. You don't have to fight anymore. It's OK, we all know your love for us." He smiled, cupped my chin with his hand and said "OK, Oprah... I mean, really.... how long can this go on?" We burst out laughing, really laughing. Take care all, and thanks so much for reading and responding. You are a courageous group of ppl. The only reason I didn't finish medical school was to remain at the bedside, with the patients. Ppl like you... forthright, inspirational, intrepid and so very resilient. While I truly regret the reason we have all met here, it doest give me a type of chance to thank all those for whom I have cared. Each of you is a fiber of the being writing these lines. Off to sleep with my comedic angel.

Thanks for the repsonses. Yes, my husband has said time and again how grateful he is that I am a nurse and could relieve some anxiety regarding who was telling him what... That part is automatic and therapeutic. The line I guess came when I was seeing neuro symptoms that no one else was picking up. I have worked hemotology oncology, HIV, vascular surgery, self employed (Hospice experience), dialysis and then trauma. Excuse me, but I *do* know my stuff. I know enough to see things changing. Not just marginally... obvious signs the Hospice was missing. I fired them. Got a new one and they are great. They have even sent a bereavement counselor to the house for me. Disenfranchised grief is my 'label' now.. actually researching on it showed that I do relate to much of what is said there: http://www.indiana.edu/~famlygrf/units/topics.html I am no longer working as a nurse, I have turned the software hobby into a career. It's easier to come home at the end of the day, but still I miss making even one person's quality of life better by having been at work as a nurse. Capitalism ain't for all of us. Enough for now. Again, thanks for the kind words.

Just wondering. Hard cohort to hunt down. With all due respect to the wonderful ppl here, it is different to care for your spouse's SCLC and death when you have worked Hospice *as* the nurse. Those of you who know the physiology, pathology and the medical 'industry'... and grieve with all of that knowledge in your head. "Just forget you are a nurse"... that doesn't work. After 20 years as a nurse... once a nurse, always a nurse. It is not something you turn "off". It becomes engrained thinking, and it changes you. At 15, also helped care for my uncle ("dad" in so many ways) when he was dying with SCLC. He was 63. My husband is 53. So much between my ears that won't come out into words. perhaps over time. thanks.

Just wanted to say thanks to the welcoming. It's a hard place to be in. I hope to write out the whole situation and post here. Not sure if it belongs in introductions or in this forum. Again, thank you kindly for your support. Oh.... on the smell thing. I might perceive it differently. Here's why: I am one of the lucky ppl that God didn't program to smell skunks. Yes... I have never, ever smelled a skunk even when my dog got sprayed when I was still a kid. So, my nostrils and olfactory bulbs are a few bricks short of a load to begin with. best to everyone

First, this is my first post here, been reading and lurking for a few months... forgive me if this rambles. countrygirl, I have been a nurse for 19 years. Yes, you can smell cancer. My husband, 53, was diagnosed this past September with extensive stage SCLC.... long story made short.... I was asleep with him, my head on his chest. For some reason I woke up because "Nancy Nurse" mode kicked in. I smelled cancer.... this was in late April/early May of 2004. The reaction that made me wake up was much like a mother hearing her child cry. I have no children, but there are certain gasping sounds, etc. that I hear in the hospital that just trigger me to wake up. Suppose it's a response to knowing what sounds are important... and after this, I guess smells can be also included in those triggers. Needless to say, I was petrified, hoped I was dreaming but knew I was not. But somehow, I couldn't accept that the smell was coming from his breath. We had been apart for a few months and he had pneumonia while he was gone. A chest Xray showed a "small, irregular parechymal density" in the upper left lobe. I got these reports in the mail shortly after this 'smell' episode. I urged him at that point to go and get another xray, as the doc had wanted him to. I never told him about the smell until after he was diagnosed bc I didn't want to freak him out. Plus, it was not 'proof' there was something going on, and he is a 'fact' person. After the chemo (which I have also given to patients and yes, that too does have an odor to it) I told him about that night, about the smell. He has had 4 rounds of VP-16 and carboplatin. We are now moving on to radiation. I haven't smelled it on him since the second round of chemo, but I have noticed the chemo smell. I have worked extensively with oncology patients and those who worked with me (nurses mostly, some aides and docs) agreed, you *can* smell it on people. The smell is one I cannot describe. It is almost rancid, but not offensive. It permeates the air around the person. It dwells in the curtains, the linens and the clothes of the person. I also remember the smell when my uncle was diagnosed when I was 14 (he also had SCLC). At that time, I wasn't sure what it was, but he didn't get chemo. He didn't smell like the man who taught me to ride my bike, mow the lawn... till the garden. Having smelled the same smell before being a nurse and after being a nurse... I have to say, yes... it does have an odor. Not sure everyone has the same sensitivity to it. Just my 2.2 cents... and 2 nostrils speaking. Hope this helps, sorry if it's rather disorganized. I wish you all the best. Kind regards.