mainecoon

Hilarious, in its own grim way. Sometimes people make thoughtlessly cruel remarks. I've made too many, either from nervousness and a desperate need to say something. Or I've tried to be flippantly witty and came off sounding like an a**hole. A few times I've made a remark which, even as I was saying it I was thinking to myself "Ooh! What the hell are you saying!?" I try to be broadminded and generous when others make regrettable remarks. Often people simply don't know what to say. So I look beyond the remark to judge its intent. Was it a clumsy attempt to lend comfort and support, or something the person thought they should say? If the remark was not ill-intentioned I just let it slide. I do draw the line at judgmental or derogatory remarks. The kind which say "Well, what to do you expect?" or "Well, if you hadn't done (this or that)". Yeah, and the biblical quotation from people I haven't seen it thirty years? Well, I got their doom and gloom right here!

How have you made out with that transfusion, Dave? Margaret went to U of M yesterday to begin her third series of treatments, and ended up coming away with two units of whole blood instead. Two days before the session she spoke of being very tired, and the night before she was extremely restless. She could only sleep about two hours at a time, and had to take two Valium to go to sleep. The thermostat was set at 76, but she still said she was freezing. I just figured her restlessness was due to extreme anxiety, and the fact that she was so fatigued was due to the Valium, lack of sleep, and general desire to avoid seeing the oncologist. A very kind friend agreed to take her to her session. I got hold of her over the cell phone about two hours after she would have seen the oncologist. She told me that her red blood cell count was too low for chemo, and that she would receive the transfusion instead. She also told me that the WBC count was good, as was the platelet count. Margaret came home and went straight to bed. When she roused herself she told me that the nurse who gave the transfusion assured her it would make her feel a lot better. When it failed to do so immediately she regarded this as a crushing defeat. She has chemo scheduled for today and tomorrow, but I think she's ready to call it quits. What's been your experience with transfusions?

My wife's therapy is almost identical to that of Candy's husband: 3 days of Carboplatin and VP16 (Etoposide), with 2 ½ weeks off. The oncologist told us he'll do another scan after the third or fourth series. This made sense to us, because we figured that the effects of the chemo would not be readily apparent for 30 - 90 days. She's being treated at the University of Michigan Cancer Care Center by an oncology team. At the time of her second consultation we received less attention from the oncologist proper, but this didn't seem to bother my wife. She's usually acutely sensitive to these things. But it was more important to her to have an attentive Physician's Assistant. As far as she's concerned the Assistant is the one who'll be making the real decisions regarding her treatment. I asked the chemo nurse administering the medication why a doctor would choose one medication over another (in this case VP-16 over Taxol). She said that she's wondered this herself, but in all the reports she's prepared in tracking the clinic's medication she could never find a pattern which would fit a particular medication to a particular therapy. Maybe there isn't, and maybe there is but she hasn't found it. As regards Medicare A and B, my wife was always under the impression that whatever care she received in the hospital is covered by Medicare A, so there's no reason to pay extra for part B. Well, I found out this varies from state to state. And in Michigan Part A does not cover any radiological procedures. We have to rely upon another insurance for all the scans. Besides that, our primary carrier does not provide for PET scans unless the doctor determines that it is medically vital. Sheesh!

Must be a generational thing. At least I thought it was until I noticed that many people younger than myself are reluctant to take medication, and are actually proud of it! Strikes me as bizarre. What's the message here? I'm strong, so I don't need to take pills? I'm part of the Woodstock Nation. Everyone I knew in college took pills of all kinds. But back then it was a political and social statement as much as a way to get high. Remember the motto "Better living through chemistry". Now I joke with my wife that she gets all the cool drugs, while I haven't had a decent drug since 1972. My wife takes Prozac and Valium. She's an extremely tense and anxious person by nature. She jumps when you cough. But the Prozac seems to help her quite a bit. She doesn't show much stress on the freeway as we go zipping to her chemo session. And the Valium allows her to sleep very soundly. I've suggested Ativan to her, but she says it doesn't work for her as well as Valium. But I don’t think she's tried Celexa. I see that some who post here have had success with this.

Thanks for your support, the both of you. I take it you made it through your surgery all right, Don? Everyone is asking.

I came across this interesting post while looking for any messages dealing with depression. I sort of feel silly researching means of dealing with depression when one considers the fact that it is a logical adjunct of a diagnosis of SCLC. I mean, why wouldn't a person be depressed? Antidepressant drugs are meant to relieve the depression which exists for no apparent reason. Right? Obviously, that's not right. My wife was diagnosed with SCLC, and has gone into a state of deep depression. A person who was once attentive to the needs of others has now become aggressive in asserting her own wants. But not in a good way. Rather, in a sort of "I'm the one who's dying here, and I'll do whatever I want" kind of way. I was diagnosed with MS several years back, and my ataxia has become progressively worse. I've had a few falls around the house and at work, several of which put be in the ER. In response to this my wife insisted I get to bed early and nap a lot, even if I wasn't tired. When people came over she would ask them to speak softly, since I was trying to sleep. Now she sleeps with the bedroom TV on loud and her light on. She smokes even more than before, as though thumbing her nose at fate. I can see her trying to drive away her family and friends. Her daughters are as attentive as they can be, but even they have hinted to me that they think they simply irritate her by being around. My wife is a an insightful and intelligent person. She worked for almost four decades as a clinical social worker, specializing in family conflict and marital therapy. She knows her antidepressant and anti-anxiety drugs. She is now taking Prozac and Valium, but will not go to any kind of therapeutic group. It's a challenge to help someone who doesn't want your help, and who insists on pushing you away. But I think of Kubler-Ross' stages of dying, and I reflect on the fact that my wife is experiencing a great deal of anger and resentment toward anyone and anything. She's angry that she'll be losing what she holds dear, and she resents the ministrations of those whose every act only serves to remind her that she's dying.. It's a challenge, but I love my wife, and I will find a way to care for her. Though I may not be a religious man I do regard one tenet of human existence as an absolute, that people must care fore each other.

Thanks for that info, Katie. My wife goes for her third round on June 11. We will definitely talk to the onc about Arenesp.

My wife was diagnosed with SCLC in April. She's had two sessions of treatment with Carboplatin and Etoposide (VP-16), each session lasting for three days. Her nausea was well controlled by the medicine given her before each treatment. Yesterday she started getting dry heaves. She told me she'd forgotten to take her Phenergan, which was originally prescribed to help her control the nausea which sometimes accompanies opiate agnostics like Oxycontin or MSContin. As you may have read, the antiemetics should be taken on a schedule whether or not a person feels nauseous. They are intended to prevent nausea, and may be of limited value if taken once nausea begins. I've been told by staff in the adult Infusion clinic at the University of Michigan that Procrit can be very effective, but it's an uncomfortable shot. I'm told it stings quite a bit when administered. Many people choose to tolerate the fatigue rather than deal with the discomfort of a Procrit injection.

Now that is positive news, Candy. I've got to tell my wife that she shouldn't get ready to throw in the towel just yet. She's told me that she could live with the bleak prospect of her diagnosis if only she could move without all the weakness and pain. Then she'd be able to do some of the thngs she wants to take care of before it's too late. I keep hoping that this upcoming session will shrink the tumor enough to remove pressure on the peripheral nerves which are causing the pain. To me this is something positive to anticipate from the chemo. Unfortunately, for my wife this would only be confirmation that the lung cancer is causing her pain. Trivia for the older and wiser: Does anyone remember tha name in the Li'l Abner character who always walked around with the little cloud of rain over his head? No fair using the Net or the big lavishly illustrated Li'l Abner book someone gave you way back when.

Thanks for the info, Jenny. My wife goes in for her second session on Wednesday. She was hoping to feel much better by now, and the fact that she feels extremely weak and in a great deal of pain discourages her. The doctor who strongly suggested that she undergo chemo gave her the impression that she would feel significantly better after the first session. When this didn't happen she felt totally defeated. Oh, by the way, the pain is mostly under control using a Duragesic patch (Fentanyl). Great stuff, in that it gives effective pain control without grogginess or impaired judgement. Just don't expect to get it at your local Rite-Aid. Most retail pharmacies don't carry it. We could only find a store that has it thanks to the efforts of my stepdaughter. My wife was hospitalized for about six weeks, beginning in the middle of February. This was for a persistent pain in her lower back and left flank. Before this she was an extremely vital person. She could even settle on the event which probably caused her back pain. After numerous diagnostic procedures the doctors concluded there was visible reason for her pain. In the meantime she lost 20 percent of her body weight, much of it muscle mass. Even when the doctors at University of Michigan finally diagnosed SCLC they were divided as to whether or not it could cause the pain. Anyway, I've tried to encourage her by gently reminding her of the positive aspects of her treatment: her hair loss was to be expected, and not a defeat because of anything she did wrong; she has had almost no nausea thanks to the antiemetic they give her prior to the chemo; her appetite is good, thanks to the megesterol; and she gets stronger day by day by eating more and walking around unassisted. But she compares these small victories to the way she was before she went in the hospital and dismisses them as irrelevant. She thinks I'm just zooming her. Sigh. . . I guess all a caregiver can do is to continue to gently remark on the positives and nurture whatever hope there may be.

Two days ago my wife noticed that there was quite a bit hair in her brush. I watched her pull out strands. It seemed to break off a few strands at a time, rather than coming out in clumps. Fortunately, we'd already ordered a wig from http://www.fekewigs.com/index.htm . I also ordered a nightcap from http://www.headcovers.com/htm . The accessory package they offer includes a basic wig stand, which my wife tells me is a handy thing to have. Now, my wife's hair began to thin about two weeks after her treatment with Carboplatin and Etoposide. I understand Carboplatin doesn't generally cause hair loss, but Etoposide is bound to. I'm glad we were prepared for this eventuality. I just know that my wife would feel extremely self-conscious being wheeled through the lobby of the U of M Hospital on her way to the infusion clinic if she were totally bald.

My wife has recently been diagnosed with extensive SCLC. I say extensive, because there is pleural involvement. Fortunately it has not metastasized to her bones or other organs. She agreed to submit to a regimen of carboplatin and etoposide. She made this choice principally to improve the quality of the last few months remaining to her. We both know there's no cure for this, and the cancer is a very aggressive one. Actually, I'm the more optimistic of the two of us. When I tell my wife positive things she looks at me in a sort of pitying and indulgent fashion. Like the character in the movie "A Night to Remember", who tells the child he is clutching as the Titanic crashes into the dark, cold depths, "It'll be alright. Don't be afraid. It'll be alright." Anyway, we're not Christian folk. We don't ascribe to any common faith. If I gave it some thought I'd characterize my belief system as a cross between animist-Taoist-Hindu beliefs, with a touch of Zen. God knows what my wife believes in. All I know is that I'm the spiritual one. But make no mistake, we do not criticize anyone's beliefs. It is a good thing to have faith. This much we do know, life can be good. The smell of moist earth in Spring, the giggles of children at play, a warm fire as the wind howls outside driving the snow before it. These are the small pleasures we share. They are also the reasons why my wife agreed to the chemo, knowing it would probably only bring her a year more of life. Many of the posts on this board regard death and dying as a defeat, a shameful thing that can only be made right somehow through a monumental expenditure of misery that leaves the victims so prostrate that it would be unreasonable to ask them to do more. My wife and I have seen many people die of this miserable disease. None have been good. My own brother recently died from throat cancer which had metastasized to his cervical spine. He was on Quadramet when he died, peacefully, after a final unsuccessful bout with pneumonia. I say peacefully, because both he and his wife had made arrangements with Hospice to attend to him when the doctors said there was nothing more they could do. It was the closest they came to actually choosing to face the end, rather than waiting for some traumatic act like heart failure to intervene. I think it is important for a person to assert himself at the end of his days by choosing to face the end, rather than regarding it as a shameful defeat to be delayed at any cost. Birth is not shameful. Neither is death. as the koan asks "What was your face before you were born?" Whence we came, to where we go. Who knows? Only those who embark on the journey will know the answer to this

I strongly recommend megestrol. The pharmacist sold us simple generic form of megestrol acetate, which is a suspension formula similar in appearance to Mylanta. It comes with a small plastic cup, which holds the recommended daily adult dose of 800 mg. One cautionary note: when the pharmacist rang up the cost he asked for $93. I have Blue Cross-Blue Shield, and I remarked that I didn't realize it was such an expensive medicine, judging by the co-pay. He agreed, and said he was lucky to have the generic in stock. He told me the brand-name megestrol runs about $1,000 for a month's supply. I suspect that insurance plans have better prescription medicine benefits and wouldn't require such a large co-pay. But it can be pricey. I agree that a good appetite is essential to health. It drove me to distraction to see my wife waste away to nothing, despite the repeated entreaties of family and friends to eat something, anything. She would tell me that she felt hungry, but that just the thought of eating anything made her nauseous. She's a slight woman to begin with, and lost 20 percent of her body weight. It wasn't the cancer that was making her lose so much weight. It was a combination of several weeks of being confined to a hospital bed and opiate agnostics, particularly Vicodin. and Oxycontin. My wife now wears a 75mg. Fentanyl patch and takes a Dilaudid pill about every twelve hours. But the Megestrol has given her a healthy appetite. I also make sure that she takes Senecot S regularly every day.