jme

Healing thoughts and prayers to you and your girls from me and my boys. I am so, so sorry for your loss. ~Jamie

Thank you all for this support. My little one is still getting counseling and my teenager was in a "Teen Group" for a while, but he didn't want to go anymore because it was taking time away from other things he wanted to do. I don't want to force him or for him to see it as a punishment. The boys will go to Camp Good Grief with other kids who have lost their parents in April. We're going on a trip this summer to NC where we all used to go every summer. We have done lots of great family bonding-memory stuff...sand sculptures on the beach, family collages that each boy has in his room full of pictures of them with Jeff and of all 4 of us together. The day before Jeff died, I made clay impressions of his thumb and wrote "I'll always love you" on them. I told the boys that Jeff woke up enough that day to write it himself. All 3 of us have our own. I don't know if it makes things better or worse though. SOmetimes Zeke (6) gets upset because he doesn't have memories of his own anymore and all he know are the pictures and what we talk about...and we talk about him all the time. Good stuff. Fun memories. But sadly, the few things that Zeke does remember are negative...times when Jeff yelled at him or something. I know that's normal for kids, but it breaks my heart. I thought that Teva(14) would be taking this the hardest, but he is doing better now. A male friend of mine who lost his dad when he was 15 has been spending time with him and giving him some guy time. It's made a big difference with him. The funny thing is that in the beginning, I had all kinds of support from my friends and family. I was surrounded and it felt good. I could look at Jeff's death as a blessing because he didn't have to suffer for too long. I was on meds too. I could feel myself starting to crumble in June and my doctor presecribed me something to help. It helped me stay strong and take care of Jeff. By October, I felt better. Jeff had been gone for 6 weeks or so, I was ready to go back to work, I did all of my Hospice homework, and I was feeling strong. So, I stopped taking the meds. I was still ok. Jeff's birthday came and went. I took off work that day and the boys and I baked daddy a cake and ate the whole thing. I was still ok. The holidays were sad, but I was still ok. My boys got great gifts that keep them outside and active. I was (still am sometimes) even riding dirtbikes with them. Part of me felt free. Jeff wouldn't have approved of me teaching our 6 year old to drive a dirtbike. He wouldn't have felt comfortable with me taking the boys out in the boat alone. He wouldn't have thought that our teenager was capable of riding motorcross like he is. We would have never done the things we are now doing together. Jeff was a homebody and i turned into one too (in retrospect, he was probalby sick for years) It's a freedom I haven't had since I was a kid. I felt good. I felt so good that everyone thougth I was just fine. I thought I was just fine. But I'm not. And I know this sounds stupid to you guys, people who understand, but I feel like I'm whining if I say I'm not fine; that I'm still in pain. I feel like I'm throwing a self-indulgent pity party. I'm a 32 year old widow...mother of 2...some days I feel like Wonder Woman...lately I just feel like damaged goods. It's like I've hit a brick wall. The lonliness is setting in. And that's pretty ironic because I am NEVER alone. I think it's coming up right now because this is about the time he started feeling bad last year. Just last year. Sometimes it feels like it was so long ago and sometimes it feels like yesterday. Last night, after I posted, I couldn't stop crying. Both boys were in bed and I was quiet, but Zeke and I must have been on the same wavelength. We hadn't talked about Jeff in days, but he came in my room and just said, "I miss daddy". I told him that I do too. Then he asked me if I could marry someone so that he could have a daddy again. "A step-dad is better than no dad," he said. What do I say to that? I don't know. Does talking about it make it better? Sometimes I think it just keeps everything raw and at the surface. Like I have this festering open would in my heart. The more I write here, the more upset I feel. Jeff kept telling me at the end, "You're young and you're pretty. You and the boys will be just fine." What does that mean? I guess these questions are all rhetorical. I'm the one with the answers, I just have to give myself time to figure them out. Thank you all for giving me a safe place to vent and get this out. I can't seem to do it in real life, in person. It makes me feel weak and I don't have the luxury of being able to fall apart right now. I think I'm too scared that if I do, I won't be able to get myself back together. I know it will eventually get better. I just hope eventually isn't too far off.

How can I be doing so well for so long and then fall apart like this today? My kids are watching tv and getting PB&Js for dinner and I'm a blubbering mess sitting in front of my computer, looking for someone I don't even know to give me a magical cure all answer that doesn't exist. Am I just feeling sorry for myself? One of my students brought me in a picture of my younger son and Jeff that was on the fridge in the concession stand of the ball park where Jeff coached. They were both in their uniforms. Jeff looked healthy and happy and Zeke was cracking up. I took one look at that picture and had to walk out of my classroom and have another teacher come in. I was bawling before I reached the door. I thought that the pain would lessen in time. Isn't that what's supposed to happen?

My husband had radiation and his LC had also spread to his bones. The radiations did give him some relief. You and your dad are in my prayers.

The last time I posted here was in May. My life has been such a whirlwind, I haven't had time. I'm not even sure I'm posting in the right forum. If not, sorry. My signature goes through most of the story, but here's the abridged version. My husband, Jeff, became sick in February. In April, after several biopsies, they figured out it was lung cancer, but didn't know what kind. He had all kinds of complications (seizures, superior vena cava syndrome, mets to all of his organs, had to get thoracentesis often to drain fluid from lungs, bile duct stents,etc)and by July, he had spent about 25 out of every 30 days in the hospital. We knew it was really bad by then and took a trip to the west coast of Fl. He was almost too weak to walk, but we stayed mellow and made some good memories. Jeff could see our boys playing on the beach out of the cottage window (he was propped up on the sofa bed) and we spent a lot of time talking. I tried to get him to write letters to the boys, but he wasn't ready yet. When we got home, he had a PET scan that revealed that the cancer was in just about every organ and moving fast. It had only been in his lungs just a couple of months before. We decided to stop treatment and go into Hospice home care. We were told tht he'd still have months to say goodbye. 3 weeks later he began to not recognize me. Our younger son (6 yrs) was scared of him. This bald, 70 pound man with tumors popping out everywhere under his skin and wild eyes...this man who couldn't walk on his own or breathe without an oxygen tank...this could not be his daddy that was coaching his Little League team just a few months ago. His daddy that would read to him every night and take him to Dunkin Donuts on Saturday mornings. HIs daddy that now couldn't even swallow a drink of water. Jeff decided to go to the Hospice house. He didn't want us to live with the memories of him dying in our house or risk scaring our boys any more. He went in on a Tuesday. He didn't wake up at all on Saturday. I had the boys come and say goodbye. On Sunday morning, he woke up. I could see that he recognized me and I told him it was ok to let go. I held his hand and tried to be strong as he died. I laid in the bed with him and hugged him and kissed him. It was the first time I was able to touch my husband without causing him pain in months. He never wrote those letters to the boys. There was so much that he wanted to tell them and leave them...something they would have later on to know how proud he was of them. Our little one is forgetting him already. He tells me that he remembers what he sees in pictures, but he doesn't really remember his daddy anymore. My question is now what? He died 6 months ago. The boys and I did HOspice counseling and we "graduated". Our now 14 year old has run away twice. Our 6 year old is having some severe social issues that are definitely related to anger. I still go through weeks where I only sleep for 2 hours a night and can't eat. Then I just want to crawl into bed and not come out. I'm trying to stay active and focused and be a good mom. But on days like today...days where all I can think of when I try to remember are the last 6 months of Jeff's life and not the wonderful 10 years we had before that...I just don't know what to do. Pray. Breathe. Put one foot in front of the other. It's not enough. I want to be doing better by now. I want to take the pain away from my children. I feel powerless.

Thanks for responding. The thing is that we have gotten numerous opinions. He was at Moffitt Cancer Research Institute for a week. He's had 4 biopsies and they were all sent out to JOhn HOpkins, Wexler, and Walter Reid. They all found cancer in every place they looked...lung, outside of lung, and lymph. The pathologist that saw the first biopsy said that she thought it was SCLC, but the stains are coming back inconclusive. They are negative for everything else and they are definitely malignant. And it's spreading FAST! What started as a few spots on his lungs and swelling from SVCS less than 2 months ago is now in both lungs, all throughout his abdomen and popping up in tumors on his back. They haven't biopsied any of the new stuff because they don't think he can handle being cut open again right now. He has pneumonia again and his white count is low from the chemo he got 8 days ago. His oncologist didn't want to start the chemo until they were sure of the diagnosis, becuase, like you said, it could be too dangerous. However, we're running out of choices. He felt that if we didn't go ahead and treat the cancer NOW, that the SVCS could kill him in the meantime. He's losing consciousness again because of lack of blood flow...he has lots of blood clots to go along with the SVCS. The good news is that the radiation (5 days on, 2 days off...20+ doses so far) has reduced the size of the biggest mass. I do have a lot of faith in the oncologist we have right now. He is getting second opinions from everyone who will call him back, but even Moffitt, a place that only does cancer treatments and research, was stumped by this. SCLC seems to be the most likely thing and we will see in a few weeks, after another chemo treatment, how well he is responding. I just want to know how scared I should be that it is spreading so fast. Will the chemo help the stuff that the radiation isn't pinpointing? If we're wrong and it's not SCLC, what does that do to his chances? I just seem to have more and more questions and all of the answers that I am getting from the doctors don't answer anything...they just create more questions. I know it's a wait and see thing right now. Have I mentioned that patience is not my strong suit?

PLease let me know if anyone has gone through this. We are so confused and nobody seems to be able to give us any answers!! We're just at the beginning of this and some days I don't know how much more I can take. It all started back in March. Jeff had not been feeling well for a while; bad enough, in fact, that he quit smoking. He began coughing up blood and having night sweats. A few days later, he went to see the doctor, had a chest x-ray, and was admitted to the hospital with pneumonia and possible TB. There he stayed in respiratory isolation for 5 days until the CDC ruled out TB and the doctors found antibiotics that decreased his pneumonia symptoms. He came home with instructions to see our family doctor and his pulmonary doctor within a few weeks. He initially felt better and then the night sweats returned, along with extreme fatigue and neck and facial swelling. Then he began losing consciousness and falling down sometimes when he coughed. The pulmonary doctor scheduled a CT scan for a Friday and a follow up appointment with him for Monday, April 10th. By Monday, the swelling was worse. It looked to us like an allergic reaction. The doctor saw the CT scans and there were 2 large masses, one of which was pressing on his superior vena cava and his bronchial artery. He scheduled an outpatient bronchoscopy for Wednesday, April 12th. We shared with him that the “passing out” thing was happening up to 5 times a day at this point and did not always accompany coughing anymore. On April 12th, when Jeff was on the table about to get anesthesia, he had another episode. He does shake and his eyes roll back in his head, so the doctor began calling these episodes seizures. They did the procedure and admitted him to the hospital. They found malignancy in the 8x5x8 cm mass that was shown on the CT scan, but could not identify the type of cancer. By this time the swelling has spread to his entire face, neck, chest, abdomen, back, and both arms. He had an MRI on the 13th and it was clear, so the doctors say that the passing out is due to Superior Vena Cava Syndrome (SVCS), which means that the mass is prohibiting the normal blood and oxygen flow between the brain and heart. His oncologist wanted to do a more invasive biopsy, but the surgeon was not comfortable with that due to the swelling and large masses. So, they did a small needle biopsy of the area around his right lung and began radiation on April 14th. This biopsy was also inconclusive, but the surgeon, pathologist, and oncologist all “think” it is small cell lung cancer because of the SVCS and other side effects. He continued radiation through the 16th and had scans of bone, brain, liver, and bladder. All were cancer free. On April 18th, the swelling became even worse and the doctors started Jeff on Heparin, (correctly) thinking that some of the swelling was caused by blood clots. He resumed radiation on the 19th and had another biopsy on the 20th. He also had anther CT scan and Chest ultrasound. Even though they removed an entire lymph node during this biopsy, they still had the same problems with pathology. They found cancer, but could not tell which kind. On April 24th, the swelling was decreasing and he had a thoracentisis done to drain 2 liters of fluid from the sac surrounding his right lung. An x-ray showed that the mass pressing on his SVC was smaller, so they moved the radiation to his lungs. During this time, samples from the 3 biopsies had been sent to Walter Reid Clinic, Wexler Clinic, and John Hopkins. When the results from the biopsies that were sent out came back, the news was the same. Its cancer, but nobody knows what kind. Because of this, our oncologist did not want to start him on chemotherapy just in case he was wrong and it wasn’t SCLC. Other possibilities were (are) lymphatic cancer, non-small cell lung cancer, or metastatic testicular cancer, all of which tested negative. So, he was sent to Moffitt Cancer Research Institute in Tampa on April 29th for a second opinion and to hopefully begin treatment. On May 2nd, the doctors at Moffitt did a new Chest CT and an Endoscopy (biopsy where they go through the nose and into the lungs) on May 3rd. The Endoscopy had the same results as the other 3 biopsies. The new CT scan, however, revealed metastatic lesions in the left lung that were not seen before and “numerous metastatic tumors in the intraperitoneal cavity” that, in retrospect, could be seen on the previous scan. The doctors did not catch them before because they were so small. In the 2 weeks between scans, they were much larger. On May 5th, I went and picked him up from Moffitt. We all had a nice quiet weekend at home and then on Monday, May 8th, he woke up at 3:00 a.m. unable to breathe. We went to the ER where he was readmitted and put back on oxygen. He had been on it for weeks, but the doctors at Moffitt sent him home without any. He resumed radiation therapy here at our local hospital and was well enough to come home again on Saturday, May 13th, with oxygen, of course. During this week, we also found 3 "lumps" on his back, under the skin. Our oncologist did not biopsy them, but thought they were also metastatic tumors. By the end of the week, we found several more of these lumps on his back. By this time, our oncologist was beside himself. He was disappointed with Moffitt’s care and lack of results. He made the decision to start Jeff on Chemotherapy for SCLC. He still thinks that all signs are pointing to SCLC and did not think that Jeff could afford to wait another minute for the next step in his treatment. He will be getting Taxol and Carboplatinum every 3 weeks. After the first 2 treatments, they should be able to tell whether it’s working or not. If so, he will continue for several doses, if not, they will change his meds and try something else. The plan was for a PIC line to be put in on May 16th after his daily radiation, as an outpatient procedure. The PIC line would be how the chemo is administered. The PIC line wouldn’t go in. The SVCS and blood clots are now blocking the SVC so thoroughly that there is no blood flow there at all and the blood from heart to brain and back is getting there through collateral veins only. He was readmitted to the hospital on May 16th, hoping to just do a surgical PIC line with the CT scan to assist in placement. They tried 3 times; it still didn’t work. The oncologist wanted to put in a port, but the surgeon said no because they will still have the same problems with the compromised blood flow and all. It was too dangerous to cut into his chest at all. Basically, the veins and arteries in his upper body are useless right now, so they decided to put a Triple Lumen Cathedar in his femoral artery. By this time, Jeff was very weak again and unable to eat most things. His weight was down to 112 pounds, with at least 10 pounds of that still being fluid in his upper body and arms from the SVCS. He was about 2 pounds from having to get a feeding tube put in his belly. On Friday, May 19th, Jeff had his first chemo treatment. His spirits were good, he was eating a little bit and regaining strength, and he got to come home on Saturday. He was still on oxygen, of course, but he was well enough to go out to breakfast on Sunday morning. Tuesday, May 23rd and Jeff wasn't doing so well. He was unable to eat again, unable to even drink a sip of water to take his medications. He’s still doing daily radiation and it’s all catching up with him. I took him back to the hospital that afternoon. Jeff and his doctors all feel that it is better that he is there right now, under constant medical supervision. My question is...WHY CAN'T THEY TELL US EXACLTY WHAT THIS IS?? Our family doctor has never seen anything like this before and our oncologist says that he has, but it's rare. We had our 10 year anniversary this week...in the hospital. I asked our kids (2 boys, 13 and 6) how they are doing right now with dad in and out of the hopstial and so sick he can't play with them right now. You know what they responded? "It's okay, mom. We're getting used to it." Well, I'm not getting used to it. Sadly, I'm just getting angry.

The new biopsy showed NSCLC instead of SCLC as the original doctors thought. I'll talk with the doctors when I go up to Tampa tomorrow and find out more sepcific info. But the good news is that he is coming home!! He's been in the hospital for almost a month and he is finally well enough to come home. Treatment will start soon and I know he (we) have a long way to go, but at least he'll be HOME!!

He was transferred to a Cancer Research Institute yesterday. We're hoping they will be able to help him more. After the 4 hour ambulance ride there, he had a really hard night. It felt so guilty having to leave him there this afternoon, but I had to get back to the kids and work. We can't afford to lose the income or source of insurance at this point. Keep us in your prayers.

Keep your chin up. This place offers so much hope. I go to work every day, go to the hopsital to visit my husband, pick up the kids, take them to see dad, go home, and put on the "I'm your mom and everything's fine" hat. By then I'm usually exhausted, depressed and sometimes a little angry...and then I come here. Read these posts and success stories and (I hope) you will find the hope and encouragement you need.

Thanks for the response Carleen. It's slightly comforting to know that this kind of confusion is common. They are going to send him to the Moffitt Cancer Research Institute in Tampa in a couple of days. The swelling is worse again and he can't eat much now due to the radiation. Our 13 year old son spent the day in the hospital with him today since he may not get to see him except on weekends while he's away. Our 6 year old boy is having nightmares and wetting the bed. I think our older boy realized just today that life as we know it has changed drastically. I just want someone to be able to give us an answer.

MIke, I am so sorry for your loss. My thoughts and prayers are with you.

They did another biopsy yesterday and now he has pneumonia again. Still haven't started chemo. It seem slike every day they say we'll start tomorrow, but it still hasn't happened. They're confused about the biopsy. Is that normal? One pathologist said SCLC, but now the other one says it might be NSCLC? How does that work? They've sent samples of his biopsy to 2 other cancer clinics for their opinions. I guess we just wait now.

You guys are incredible. Thank you so much for all of the support. His swelling is even worse today. I'm not sure how much more his skin can handle. He got to look at himself today in a full mirror and it scared him. Our GP came back from vacation today and saw him while he was getting a liver CT scan and was speechless. He's the only doctor who knows what Jeff looks like under all of that fluid. dchurchi ~ how badly did your husband swell up? I also noticed that you said he responded well to the initial treatment. Did it come back? We got some *good* news today and some confusing news also. I'll start with the confusing news... One oncologist looked at his biopsy Saturday night and said small cell with certainty. The other oncologist says that the pathology is not yet difinitive and they "don't know what it is", besides malignant, of course. Because of this, he hasn't been able to start the chemo yet. Now the good news...He had a whole bunch of CT scans today: brain, liver, bladder, testes. They all came back "clean". He's getting another CT scan of his chest this evening to monitor the "mass". I know this doesn't mean that more cancer isn't there, hidden and waiting to spring, but it's hope wrapped up in a nice bright red ribbon. We're just in the beginning stages of this, but already hope is priceless. After all of this testing is done, he'll get a PET scan and hopefully that will tell us if the CT scans missed anything. If all goes as planned (stop laughing!), he may get to come home from the hospital next week. He' still losing consciousness and falling down because of the SVCS, so they have to get that under control first. Again, thank you all so much for the welcome. Keep the prayers coming.

My name is Jamie and my husband's name is Jeff. We have 2 wonderful boys, 6 and 13 years old. This site was recommended to us today by a friend, a lung cancer survivor. My husband has never been a very healthy person. He's almost 18 years older than me, smokes (smoked), has adult onset asthma. About 6 weeks ago, he developed pneumonia. (It was so bad, he stopped smoking after a 35 year 2 pack a day habit.) After a week of coughing up blood and having night fevers, a nurse friend of ours suggested the ER and he was quickly admitted. He was in the hospital for 5 days, until they ruled out TB and confirmed a nasty pnuemonia. He had a "pocket of puss" the size of a softball in his right lung. He came home and we expected some improvement. He was too weak to work, he could barely even coach 2 innings of our son's Little League games without having to sit down. A couple more weeks passed. HE started having new symptoms. Mind you, the blood cough was gone and so were the fevers. Now, he was losing conscoiusness and falling down like a sack of potatoes. Sometimes, he would convulse a bit before he woke up 4-5 seconds later. Then came the swelling. Now, my husband is 5'10" and 130 pounds soaking wet. Think Iggy Pop. Withing days, he looked like William Shatner, all swollen and bloated in the face and neck. FInally, it scared his doctors. He had a CT scan, an MRI (seizures), and was scheduled for a Bronchoscopy on Wednesday, 4/12/06. HE had a seizure before the procedure, so they decided to keep him. The bronchoscopy showed nothing (they were still thinking TB, infection in the Lymph nodes, and possibly lymph cancer. His CT showed that his lymph nodes are so enlarged (one is 8cm X 5 cm x 8 cm) and pressing on his superior vena cava and his pulmonary artery at the same time...that explains the passing out/seizures. The doctor thought that with just a few days of radiation that the lymphs would decrease, the swelling would go away, and then we could concentrate on the underlying cause. In the meantime, they did a small needle biopsy. This morning...Happy Easter...we were told about small cell lung cancer. If it's just in his lung or in one spot, we have a decent chance. They are checking for metastisis to other organs. The 3 days of radiation that he has had didn't put a dent in the size of the mass, as the doctor had hoped. He's now even more swollen, passing out more often, every tiny blood vessel in his abdomen has ruptured. He's in pain. The swelling is so bad, his poor little heart is having to work too hard to get blood and oxygen where it belongs. HE feels like something is sitting on his chest. It's extended into his arms. I don't know how much longer they will keep him in the hopsital. I'm a teacher and we've been on Spring Break this week, so I've been there, but we go back to school/work tomorrow. I'm scared. I'm worried. I am engulfed in sadness. We've told our boys and I'm not sure how much they understand. Jeff has a fantastic attitude. He's ready to fight. I just want to know how to make my eyes stop leaking. He's the love of my life.