Larry's Wife

My Dad-career Air Force (navigator and radar evaluation). Died 08/2000 of prostate cancer. My Mom-Air Force (NCO, left the service when she married my dad, officer. Back in those days, it was a big no-no to fraternize). She lives on our property in her own little house my husband built for her. She tells folks she lives in my back yard.

Group hug: ((((((((((((((Gail Denise Lynn)))))))))))))))

Gail, I SO understand where you are coming from. .That's exactly where Larry and I are right now. He told me this morning that he just realized he is going to have a painful death. I told him that it doesn't have to be that way (he really resists the pain meds - doesn't like the way they make him feel), that we can treat the pain. So he asked for a dose of morphine (his second ever). ....sorrow abounds today. But tomorrow could be a good day. I sure pray so. Such a roller coaster.

That's great news, Denise! Congratulations!

What a heartwarming story!

Yeah, when you are touched by cancer, you really do find out HOW your friends are. Some friends avoid you. Some friends depress you. Some friends grill you. And some friends simply treat you as a friend.

Well, we had a first, today. Larry's first dose of morphine. He has been in a lot of pain since his CyberKnife treatment on the 12th. Been blaming it on his sciatica and degenerative discs. But it's been getting steadily worse. He's been taking an occasional Lortab for the pain. Says it helps. Well, the last two days he took two Lortabs instead of his usual one. Offerred him morphine yesterday. Almost took it, decided to give the Lortab a bit more time to kick in. This morning, first thing he said to me was the Lortab wasn't working at all. I offerred the morphine. He accepted. I gave him .25ml at 7:00 a.m. And I grieved over it! I was really surprised at my reaction, because it has been very frustrating to me that I have medicine available to relieve his pain and he wouldn't accept it. I just don't see any good reason for him to be in pain. But, when he actually accepted it after all this time, well, it just broke my heart. And Larry, well, he has been very quiet all day. He's not in pain (or so he tells me), but I think maybe he is grieving over it, too.

jaminkw, I agree. I am blessed. I was and will always be my father's daughter!

I don't know much, but I do know this...everybody is different. Don't be discouraged by the statistics. You don't know how "those experts" compiled those statistics, or how old those statistics are. But the one thing about those statistics, there is always a percentage of folks who survive. So why can't it be YOUR loved one, and MINE? And there are plenty of folks right on this forum who ARE survivors. Don't lose hope.

After my Dad died (aggressive prostate cancer, very traumatic death), I also had a dream. I was driving down the road. I got to an intersection, and there stood my dad! I slammed on the brakes and jumped out of the car. Dad, Dad! I've missed you so much! Dad, you have all your hair! (My dad had the most glorious full head of red hair right up until the day he shaved himself bald before he started chemo treatments.) I know. Isn't that cool? Dad, you're dead. Yeah, but would you mind if I come to visit you once in a while? Of course not! I cried every single day before I had that dream. But he was at peace. I could see it on his face! And, although I still miss my dad terribly, I have not shed a single tear for him after that dream. Now, I remember all the love he gave to me in the 40 years and 4 days that we had together. And I am comforted. You'll never convince me that he didn't come to me to let me know that he was OK. Oh, and those tears? Well, misting up doesn't count when it's caused by an overwhelming feeling of love.

Congrats on the good news!

mas-a, have you contacted the insurance company directly? I was always under the impression that offering a COBRA policy was a requirement, not an option. As a matter of fact, my husband just retired effective May 1, 2008. He carried family coverage for our son and me. When he retired, we were given the COBRA information. We opted to cover our son but not me, due to the high cost (thankfully, Larry's coverage is paid for as a retiree benefit through his employer). I actually had to sign a paper stating that I didn't want the coverage for myself. Since I signed that paper, I have received two letters from the insurance company telling me I can still sign up. Anyway, it may be be worth your time to make that call. Good luck!

Never mind. Repeated blood test. Came back low normal (3.7), so we're all figuring the first test was incorrect. We're celebrating with chocolate covered raisins and gatorade.

Denise, I totally understand where you are coming from. Years ago, when Larry was going through non-hodgkins's lymphoma, he told me that he felt sorry for me. For me? Why? Because I can take my treatments and do something about my cancer. But you?...you have to watch. That's a thousand times harder than what I have to do. How profound.

Hi Carol. Welcome! Lynn from Brevard County.

Welcome, Kerri. We're "purt near" neighbors. We're in Brevard County.

This will be a long, rambling post. I apologize in advance. On 01-26-08, Larry was admitted to ICU through the ER after having seizures. A doc affiliated with our onc doc's office recommended Hospice to me when he was brought to ICU. The next day, oldest daughter and I spoke with the Hospice social worker and we signed up. He was transferred to the Hospice Wing that very day. Unfortunately, the two women who transferred him to his new bed were rough with him. They aggravated a chronic sciatic nerve/disc degeneration problem Larry has had for a few years now. Were they Hospice staff? I'm not sure. But they were banned from the room at our insistence. The next day, Larry wanted to come home. He was totally out of his head, but he knew he wanted to be home. Me? I wasn't so sure. I have absolutely NO medical training. I'm not caretaker material. But Larry wanted to come home, so the arrangements were made, and VERY quickly at that. Larry wanted the catheter out. Me? I wasn't so sure. I have absolutely NO medical training. I'm not caretaker material. (See a pattern here?) So, doc talked to me about a "Texas Catheter". Perhaps I misunderstood, but I thought that the catheter he had was going to be removed. I promised him all morning that it was going to be removed as soon as we got home. While he was on the transport bed, I found out the catheter was not going to be removed for 3 days (his expected life expectancy at that time), so I spoke with doc again. She told me that she ordered the catheter left in because of my fears. I told her that I had promised Larry that the catheter would be removed. She told me, "You are an excellent advocate for your husband", and the catheter was removed right before he was transported home. So, we got home, and people starting arriving. Larry flourished. He held court from his hospital bed for about 100 admirers! Later that evening, a hospice nurse came over and explained all the meds we were given and all the meds we were yet to receive and how and why to administer them. OK, Lynn, breathe. You can do this! The next day, a CNA arrived to do a bath. We didn't like her straight off (she insulted Larry's beloved Packers!), but she taught us how to adjust him in the bed and other helpful hints. Turned out, she wasn't our regular CNA, who we came to love dearly. The next day, our community nurse and our med package came. Unfortunately for our nurse, the one drug we desperately needed, Haldol, was missing from the package. My support system was ready to walk out on me, because Larry was having hallucinations and was being EXTREMELY difficult to deal with . They were at the end of their collective ropes, and I (repeat mantra) have absolutely NO medical training. I'm not caretaker material. "I DON'T CARE HOW MUCH IT COSTS AND HOW FAR I HAVE TO DRIVE TO GET IT, I NEED THAT HALDOL!!!!!!!!" Poor dear, she told me that there would be no cost to us. I reiterated: I DON'T CARE HOW MUCH IT COSTS AND HOW FAR I HAVE TO DRIVE TO GET IT, I NEED THAT HALDOL!!!!!!!! She called in a local prescription and we got our Haldol. After that, we settled into our routine. Doctor comes once a month, nurse comes once a week, CNA comes up to 3 times a week. We love them all! And you can always call them (day or night) with a question. They are very responsive. And maybe it is because Larry has insurance through his employer (Cigna), but we are on Hospice, chemotherapy and even CyberKnife simultaneously. Actually, we are all surprised that Cigna is covering everything simultaneously. They even pay for his periodic scans through the onc doc. The way I understand it, Hospice is non-profit, so, of course, they cannot afford to pay for treatments and scans. But if your insurance is willing to pay for treatments and scans while on Hospice, you can continue with both simultaneously. And if your insurance company requires you to drop Hospice while you pursue other treatment options, Hospice will pick you back up immediately after treatment ends. I guess my main purpose of posting all this nonsense is to say this: If you are expecting 24-hour home care, Hospice will probably not satisty you. But if you are willling to learn how to take care of your loved one with support from professionals, you will probably appreciate and come to love your Hospice staff. And don't just assume that your insurance company won't cover all your treatments and Hospice simultaneously. Pursue it with your insurance company if you have to. Even though the CyberKnife folks and Hospice doubted that our insurance company would come through for us, they did. Oh, and it's probably pretty telling to add this: Both Larry and I were mortified to think that we would have to drop Hospice for even one single day to pursue CyberKnife. Thankfully, we didn't have to. Phew!

Gosh. Got a little scared tonight. Larry had a relaxation massage today. Took a nap around 5:30. "Only want to sleep for a little while." Checked on him about 7:30. Sleeping soundly. OK, good. 9:00 Started worrying. Should I check on him? He never sleeps this long. Checked on him. All is OK. 10:30 Still sleeping? Never sleeps this long. Really nervous now. Check on him. He wakes while I am checking on him. Dang, didn't mean to wake him up. Now he probably won't go back to bed and sleep through the night. Stupid potassium. Wouldn't have worried at all if it weren't for a bad blood test.

I was very saddened to hear abut Senator Kennedy. I am praying for him and his family. He has a long road ahead, as all of of here well know.

Hi Teri. Our docs also told us that they don't recommend chemo and radiation at the same time. Sounds like you got good information from your docs. Lynn

Hi. My husband has stage 4 SCLC, diagnosed 07/07. He is on his third type of chemo (Gemzar). He's had two treatments so far. We went in for his third treatment on 05/14, but he couldn't have it because his platelets were too low. Today, we got a call from the office telling us his potassium is too high. No medicine yet, but extra fluids and dietary restrictions for today. Tomorrow we go in for another blood test. If it's still too high, I imagine they will prescribe something. They almost did today. His level is 6.7 (He's had blood drawn every single week since 07/07 and this has never been an issue before. Anyway, I did a little research on the web (I know...can be dangerous sometimes!) The only connection I could find is kidney damage. We know he has mets in his adrenal glands, liver and brain. Oh, he did have CyberKnife on 05/12 for brain mets, but somehow, I don't think that is the connection. Has anybody experienced this? If so, what was the diagnosis/outcome for you? Any comments would be appreciated. Thanks in advance. Lynn

Hi Karen, I'm a new member here, too. It's a real friendly place. I've already been made to feel quite at home. Hope you do, too. Welcome aboard!

Barbara, thank you for saying that. Boy, I'm glad I found you guys!!

Thanks, all. You have already helped me...by letting me vent all the things I can't say out loud. I put down some baggage last night that I have been carrying for awhile. Whew! I'm feeling much better today.

Sorry. I forgot to add. My name is Lynn. And thanks for letting me vent. I needed to let that out. I'm going to go to bed now and have a good cathartic cry. Talk to you tomorrow.