kate1621

Well, we went for 2nd opinion at another center. The oncologist came in, w/a case manager/social worker. He didn't know all the details, that J's already in treatment. He was looking at a possible incoming new diagnosis patient. He sat on the stool, at eye level with us. The current guy is always looking down at us, and it never feels like a converation between us, more of him talking at us. What a difference. He started by asking J how he was feeling. J started spieling off the usual: fatigue, throat constriction, nausea etc. The dr then clarified the question. How are you feeling? (as opposed to What are your physical symptoms?) Then he explained his role in a cancer patient's treatment, and asked what our expectations were from the visit. We gave him the chronology of events, and our list of concerns. He took J's films, and the packet I brought. (I have his complete medical history-summary reports, blood counts, pathology reports, chemo orders, daily radiation log, etc.) He asked if he could present all info to his colleagues, and said he'd be back, handed "floor" to case manager. She explained her role w/anyone treated at the center, then opened up a discussion about coping, fears, struggles etc. He came back, and explained J's tumor inside and out, how each drug works, how the radiation ties in, the challenges a surgeon faces in direct relation to J's tumor. He spoke of vessels, nerves, and their function. Then he did a brief physical exam. J actually engaged in the conversation. If he didn't understood what was said, the dr reworded his phrasing. This thing in him has seemed so alien to him, and the current onc speaks in scientific terms, so J stops listening as soon as he can't understand. (usually early on) He explained which drug was causing him each problem. The dr even moved to J's other side when he realized that his hearing has been seriously affected. (talking to J can be a real challenge) He explained that J needs to drink at least 1 gallon of water daily, instead of "plenty of fluids". I felt silly, because I had to fight back the tears. Happy tears, as I watched this man "flip the on switch" for J. This man gave us more information in an afternoon than we've gotten from current place in 3 months. I might even bet that he said more words in one visit than current guy has said in 3 months. He said that he completely concurred w/current treatment, except he would spread out the cisplatinum. He said the 8 day regimen was making him so sick, and it wasn't absolutely necessarry, though it is most aggressive. THE BAD NEWS: He doesn't think it's in his best interest medically to interrupt treatment right now to change facilities. (J's set for chemo again all next week) He said he'd be happy to speak w/current onc about the cisplatinum schedule, but maximizing the treatment's potential requires staying put for now. He said I just need to remain vigilant about the areas that are so sloppy. He said it would be more beneficial to switch after this cycle, if that's what he wants to do. If only I'd been more aggressive from the onset. I feel strongly that this guy would be so much better, just because of his manner. Maybe he wouldn't have ended up hospitalized, if he had the cisplatinum over a longer period. J is highly fearful of this next time around, and it didn't have to be this way. I honestly don't know if he's committed to continuing treatment, or fighting this. J went back to work after appointment. I cried all the way home.(not swift during rush hour traffic when you drive a standard) I cried late into the night. Sadly, J had someone else "assisting" him in the early diagnosis stages. Someone else "assisted" him in choosing his care. I respected his choice, and stayed in the background, quiet. What was I thinking??? I thought it was the right thing to do by him, even though I knew there would be consequences. I didn't want to fight, when the word cancer had just been introduced to him. What an idiot I am. I showed "respect" by standing by and watching him make bad, life altering decisions. Though obviously irrelevant, the dr (yesterday) had a slight speach impediment/stutter. I wonder if that plays a part in how he's developed such clear and "humane" communication skills. Sorry to ramble..anyways, I have no idea what the next few days will bring. I only wish to get them over with. Kate

I hope all affected can manage to stay safe/dry. I'll be thinking of you and yours. On another note, can I get in the xanax line? Kate

Well, today we meet w/new oncologist to get 2nd opinion/possibly change to his care. My list of questions seems endless as I try to scale it down to 2 pages. Yesterday we met w/current oncologist. Left there sorta' shocked, confused. At onset of treatment, we asked what plan would be if treatment didn't produce adequate shrinkage to perform surgery. He said--cross that bridge when we get there. Well, we're ready for round 2, he says if this doesn't do it, no surgey ever, only pallaitive care. I can't help but wonder how he can say that w/no new scans, and without input from a surgeon. He arranged for second week of chemo for next week, and we wonder if we're just kind of stuck w/it now. If we switch doctors/cancer centers now, will delay in chemo reduce it's effectiveness, this treatment has been dubbed the "now or never". We asked radiation oncologist this morning, he said it wasn't highly advisable to disrupt schedule, but that he had no definitive data, ask medical oncologist. I got J's complete medical history to date. In there I saw he's been staged at 3b, though when we asked, we were told either 2 or 3, but it didn't really matter, treatment would be same. I wonder why it wasn't clarified to us when staging was done. Is that normal? I guess all we can do is listen to what this other guy thinks. Thanks for being here. Kate

You and yours will be in our prayers. Kate

Sorry I'm a little late here, but welcome. I'm far too new here to offer any sound advice, other than keep coming here, these folks are a wealth of info/experience/support. Wishing you and yours well, Kate

Hooooorraaaayyyyy for STABLE. Kate

Hi Kathy Welcome. Sorry you have to be here, and my condolences re: the loss of your dad. I'm very new here, so unfortunately, I have no words of wisdom re: your treatment. The folks here are a wealth of info/support/kindness, and I'm sure others will chime in soon. Wishing you well, Kate

Wishing clean scans for you, and some deserved peace. Kate

I wish you luck w/treatment tomorrow. Hopefully this will obliterate the monster. Sound like a baby??!!? NO WAY. Keep in mind--the light at the end of the tunnel isn't always an oncoming train. Kate

Hello, The past 2 weeks have been very hard, and I really could use your wisdom. J. ended up hospitalized after 1 week of chemo. There's been a series of events that are making me highly uncomfortable, and we're thinking about changing doctors before he has next round in 2 weeks. 8/23 Started vp-16/cisplatin. 8/24 Reported facial abnormality, told not to worry. (His eye was droopy, couldn't whistle or smile right) 8/25 Reiterated concern about facial problems. Told not to worry. Otherwise, J holding up pretty well, slight nausea/vomiting/controlled with compazine. 8/26 Ditto 8/27 Reiterated concerns about face/getting worse. 8/29 Major vomiting, all day. Unable to hold down compazine. Kept pumping him w/small amounts food/water/gatorade. 8/30 Saw radiation onc. at our 6:30 am radiation treatment. He prescribed Zofran. (dissolves in mouth) J exhausted after 24 hours of vomitting 3-4 times an hour. Face very bad. I said I wanted it looked at, NOW. Went for chemo after radiation. Chemo calendar from chemo suite nurses indicates vp-16 and cisplatin. Order from oncologist says only cisplatin. I told nurses nothing being administered until clarification, and until someone looks at his face!! Physician's Assistant came to look at J's face. Ordered CT scan of head. PA comes back and says time for MRI, possibly meningitis!!! Chemo order clarified, was a clerical error on nurse's end, received cisplatin while waiting for MRI. Had MRI, told we'd get results in a day or 2. I asked why, told noone available to read it. I said we'd prefer to wait to see if someone could read results. Miraculously, someone became available to read results after about 45 minutes. No meningitis. Instruced to meet PA 8/30 after 1:00 pm to further evaluate face. J was very sick. Zofran was a godsend. Seriously helped control vomiting, now biggest problem was loss of facial muscles, fluids dribbling out of mouth. Also dealing with discomfort from morphine side effects. (constipation/ taking sennacot, with little results) 8/31 J exhausted, still fighting vomiting. Right side of face almost completely collapsed!! Met w/PA, they said blood test for Lyme Disease. (even though J didn't want to go in, not wanting to face any poking, needles) She also said CT scan showed something, possible aneurysm!! Scheduled appointment in 2 weeks for MRA. Sorry, everyone on vacation, nothing available sooner. I asked if he was dehydrated, reported how much fluid intake vs. how much urinating. (I had him going in a measuring cup) She said he didn't look "dry", and asked if he wanted to receive IV hydration preventatively. J wasn't up to it. He was in pain, just wanted to get in bed, barely able to walk. 9/1 J was feeling much better prior to radiation. On way home, serious cramping, seemed sennakot was starting to work. Wednesday brought on the diarrhea. He was sooo sick. I started pushing pedialyte on him. He was very distraught. Also, got inital results, positive for Lyme Disease, started antibiotic. 9/2 Saw radiation onc. in early am. Told him I was very scared that J was dehydrated. He was in a lot of pain, not eating or drinking. Face very bad. I told doc to either find a way to get MRA now, or I'd start calling around state to find someone w/sooner appt. J sent to ER for hydration immediately after treatment. Kept there all day, resulting in admission to hospital, very low wbc/sodium counts. The ER doc said MRI for meningitis not best test, should be spinal tap. Also said that Lyme test was initial test, further test needed, though antibiotic won't hurt any in interim. Also got MRA, another miraculous available opening. 9/2-9/4 J in hospital. They let me stay in his room. He was very ambivelant, afraid. He requested that it be put in his chart NO OTHER VISITORS. He was still dealing w/diarrhea, very embarrassed, wouldn't let nurses attend to him, only wanted me. (Lord knows a nurse has never cleaned up vomit, ) I left Thurs. night for 2 hours, so I could work. Distress call came, his mom was there, he doesn't have it in him to evict her. I was very mad. It was in his chart, nurses should've kept her out. I immediately went back, explained that she had to leave. She said she understood that was his wish, but she "needed to see him". After repeatedly asking, told that MRA was clear, no aneurysm. Upon discharge, PA said sennakot probably caused diarrhea (though he took LESS than bottle indicated), and that he should've stayed for hydration on Tuesday when it was offered. Her manner was "scolding". She also had few choice things to say about ER doc, as though I really cared about their internal soap opera. He's finally home, a little better. He's meeting w/pulmonist on Tuesday. (pulmonist works from different hospital). J's highly uncomfortable w/how this all came down. He's upset that he didn't see med. oncologist once throughout entire past 2 weeks, that onc. passed him off to PA. It's very frustrating that I have to repeatedly threaten to suspend treatment to get other issues addressed. I'm coming down w/a cold. No biggie, but I'm worried about his low blood counts. They talked about giving him medication for it, but decided against it, w/no explanation yet, we need to ask med. onc, at our 9/13 appointment. My house is a wreck, and I'm playing serious catch-up w/work. Is this the way it's suppose to work? Are all oncologists just too busy? Should I be alarmed by the clerical error w/chemo orders? Sorry this is so long, but I'm really confused, and feeling like his care could be better. I don't think the doc is incompetent, just the cancer center is small, w/many patients, and maybe he'll get better care elsewhere? Thanks in advance. Kate

OMG!! How ironic. I won't hijack your post, but know that I can totally sympathize w/you today. I'm so mad today I could spit nails, but I have to work for a few hours before I can process our day. Isn't it aggravating when one hand doesnt know what the other's doing? Are they blind? Can't they tell when someone's in pain? Do they think people undergoing treatment volunteer for unnecessarry aggravation/tests?? Aren't they supposed to be trained for this stuff?? Both of J's oncologists went on vacation simultaneously the week that he started radiation/chemo. Radiation oncologist said everyone's getting vacations done before kids go back to school. How nice for them. That's my problem how?? I completely support your theory about speaking up for dad. Isn't it frightening to think of what could be without a LOUD mouthpeice? The past 2 days I'm sure I've made enough folks mad, so they'll be glad if we change to another care provider. (which is what I'm investigating) I hope this was just an off day w/your dad's oncologist. Sorry you had such a hard time. Please, rant some more. Then I won't feel guilty when I unleash the venom I have today later. I hope your dad's managing ok. Kate

Wishing you and yours well. Kate

Thanks so much for being here. The circumstances aren't really conducive to J's mom providing certain supports. Both of his parents are elderly, sickly, father cant be left alone long enough to share in transporting, she's got many serious health issues of her own. A counselor said it best when he said that her behaviors/value system are toxic to my well being. There's no particular "hatchett" that can be buried. I am going to have him schedule a set time for her to come and visit, even if it's every afternoon, so I can get out of the house. I could take laptop to friend's house to do paperwork, or take a nap. I've also compiled a short list of things she can do to help, and hopefully it will ease her sense of helplessness. Pick up groceries when she does her shopping, etc. I know that he'll be worried if she's upset, so I am committed to trying to be compassionate of her needs too. I just feel like my house has become a free for all, and I really need to maintain a little order, and our income. The frequent drop ins from well wishers is really a challenge w/my work schedule. That's why I try to schedule short shifts, w/many breaks through day. My job is non-negotiable. His job is too physically demanding for him to do right now, so our income is seriously affected now. We're going to be struggling to pay rent, and feel strongly that we need to move. My job is crucial right now. Will definitely start locking door. The chemo ends on Monday, so just doing the radiation will make my schedule a lot easier, too. He was up sick all night. He is soooo sick today. Not holding water even. He's in a lot pain too, throwing up the morphine too. Thanks so much for being here. Kate

Hello, Well, here's the scoop: J's done 5 days of chemo/radiation. Morphine is helping pain, when I can cajole him into taking it. He's dealing w/nausea, dizziness, weird paralysis on left side of face (??), not feeling so hot in general. He has anti nausea medication at home, plus ativan, which I've been giving him at night to help him rest. My schedule looks something like this: 7 am drive J to hospital 8 am leave him for about 90 minutes, try to run errands/work 9:45 back at hospital, stay w/him when chemo is being administered 12:00 Home again 12:30-3:00 pm work 3:00 pm chores/meal preparation 4:00 work 6:00 pm supper 8:00 pm work 10:00 pm sleep 1:30 am work 4:00 am sleep 6:00 am get up/start all over My job is inbound customer service rep, I telecommute. I have some flexibility w/hours. I can work in 2 hour increments throughout day. I also take laptop to hospital while he's getting chemo. However, that is the only flexibility I have. The boundaries are strict. I must have silent/professional work environment, all calls are recorded/monitored, and even a noise cancelling headset isn't fool proof. If I must cancel a shift, I must give 24 hour's notice, and I must be productive. There are percentage requirements that are stringent. If I fail to meet adherence, I lose bonus shifts-$$. J's parents are highly disturbed by the fact that my home phone rolls directly to machine when I'm working. They refuse to leave messages on machine. (I have caller ID). He calls them daily, to the point where I have to schedule work around his making calls to them. If they're not home when he calls, the stress increases. Yesterday, while I was working, J's mom called twice during hour. No message on machine. Few minutes later, I hear this bellowing in my kitchen. There she is, calling for him. (he was in back room) I had to immediately log out of company server, due to noise. She decided that because we couldn't answer phone, she'd drive over to say hi, even though he'd already called her that morning to check in. I ended up losing 4 hours of work time/bonus time. I have 2 frustrations. 1)work is work, she wouldn't show up at his job, why show up at mine? 2) She just walked in. I find this to be incredibly rude. We aren't close. In fact, we've had 1 (not so pleasant) conversation in 3 years. My friends know that I value my privacy, and need my work space to be quiet, and understand that this is a boundary for me. For me, it feels like a blatant disregard for the fact that I live here too. Her son is here, so she can do whatever she needs to do? Is she entitled to unlimited access to him in my house?? It turned into conflict w/J and I. What kind of son would he be if he didn't side w/mom? (his words) I got all the excuses, she's scared, misses him, is worried. Fine, how about some common courtesy? How about scheduling a visit? Not to mention the fact that my house is a mess, and the last thing I need is unannounced company. I'm just glad she didn't walk in at a more "inappropriate" time, or when I was coming out of shower in a towel. Is this common for family members to do w/a cancer diagnosis? Can someone play devil's advocate? I'm totally disghusted. I can't count on her for any type of support, all I get is aggravation. Isn't my plate full enough? Will this get easier w/time? Insult to injury, when we return to hospital on Monday, we're starting w/conflicting instructions. Nurse says only cisplatin, yet my notes, plus chart from Oncologist shows vp16 and cisplatin. Does one hand know what the other is doing? I guess part of my stress just comes from the fact that I'm sleeping 2-3 hours at a time, and am running all the time. Sorry to rant. Kate -----------------------------

Thanks for the reality check. Kate

Hi Karen, If it's any consolation, I struggle to shower too, and the only child in this house is 50 yrs. old. I hope your family can give you some relief. Toddlers present a challenge no matter what the circumstance. I hope you can look forward to the snickering you'll do when your husband discovers the reality of grocery shopping with a little one. Wishing you and yours well, Kate

Me and mine are thinking of you and yours. Kate

I hope you start feeling better, and that this drug does the trick for you. Why can't they develop a chemo that only attacks leg hair? Re: waking you up for water and temp check, I'm guilty of doing the same thing. I guess I just need to know he's ok, and I feel so helpless sometimes. Thanks for sharing the patient's perspective. Wishing you and yours well, Kate

Hi I just wanted to wish you luck w/your biopsy. Ditto what the others have said--notebook, recorder is the best way to go. Kate

Hi Tracy Welcome. I'm new here too so I have little wisdom to offer, but know that the folks here are awesome, and have some great information. My SO has been recently dx'd too, and it took many, many weeks. I can really sympathize with how scary and frustrating the whole thing is. Hang in there. Kate

I just wanted to say hi, and welcome. I'm pretty new too, but stick around. These folks are a wealth of information/inspiration/hope. Kate

Hi folks, Yep, I disappeared, but not really. I've been sifting through all the information here regularly. Thanks to you all here, I got tests, treatment plan sorta nailed down for J. (my SO) He starts vp16 and cisplatin Monday 8/23, along w/radiation. They're giving him Anzamet and some steroid for nausea first. We have the early bird schedule. 6:30 am start time, then radiation will remain at that time so he can still try to work. At least I'll miss the morning rush hour traffic. I feel somewhat uneasy about the whole plan, but I think he should get treatment started, we can always go elsewhere after chemo week ends. I'm looking into it. I highly doubt he'll be able to work much longer. My work schedule consists of working a few hours here and there during day, then graveyard hours . Sometimes it's so difficult just to make the necessarry phone calls. We can throw away our dressers, as I've learned that we can function just fine out of the laundry baskets; clean clothes havent been put away for weeks. Cats didn't get fed today until they finally threatened to report me to the ASPCA at 4 pm. (they usually eat at 9 am) J's been in awful pain the past 4 days. Both arms, back, head, has blurred vision, and very dizzy. After first meeting w/oncologist, he said if we had questions to call, then he went on vacation, not back yet. I'll try to be more consistent, but know that I'm lurking EVERY day, and your experiences and interactions w/one another has made this a lot easier. Thanks, Kate One of these days I'll compose a sig line. However--SO w/pancoast tumor, nsclc, either stage 2 or 3, never given definitive answer, told it doesn't really matter, treatment is all that matters.

Hi, This is my first post to this board, though not to this forum. I was wondering if it's common for men to conceal symptoms/info. Have you minimized how your body feels? Have you minimized or concealed your thoughts/fears? Have you been less than forthright with information? If so, how come? What can a partner do to prevent this or make it easier to share the truth with? Any/all insights are sincerely appreciated. Kate

The scary part is that I don't know that he has a diagnosis yet, other than pancoast tumor, possibly stage 2 or 3. The testing has been ongoing since mid-june. I will be attending first consultation on Friday, w/radiation oncologist. Next one is following Monday, w/thoracic surgeon, to schedule a biopsy. I have no confidence in the process to date. It's been botched, of that I'm sure, from speaking w/ nurse at American Cancer Society. He has pulmonary test, and MRI scheduled this week. I have a feeling that there will be more tests coming, before final consultation w/oncologist to discuss treatment options. I've moved up all tests to best of my ability, and have had contact w/HMO for referral authorizations. I feel better about how things are progressing now. I'm fighting the frustration/anger I feel towards those that were instrumental in the delays. I'm also frustrated w/his responsibility in fostering the delays. I realize that there's no time for the blame game, but he could've been in treatment already, instead of tripping over/tip toeing around egos and power issues. Like we need more obstacles. Hopefully, by August 14th, I'll be able to construct a history for my signature line. Until then, I'm focusing on getting things arranged, and providing him w/the help he needs to fight this monster. Thanks again. Kate

I just wanted to express my appreciation. I've learned that my boyfriend's diagnosis process has turned into a colossall circus, and though I can't undo the damage, I've taken many steps to be corrective/proactive, thanks to you all here. His family has been handling things, which has meant my exclusion, even though we live together. The process has been botched/delayed. This has ceased. I've taken the bull by the horns w/his cooperation, and am feeling more confident in getting him into treatment. For now, it's going to rest on my shoulders, but I'm hoping that there will be support in the future. I've managed to reel in test dates/consultations, find good sources of info when I can't understand the terminology, and am feeling more and more that maybe I can do this. All positive steps forward originated here, from your own experiences, and the links in your sig lines. I've lurked for a little bit now, feeling as though I know you. Getting up one day to read of the losses brought tears for strangers, which was so odd. Then came the anger and fear, as I realized that the words could be my own in the future. Then came the guilt for being "mad", which flung me back into the reality that this monster kills; even warriors can be overcome. And to think, I used to like roller coasters. Thanks for being here.