salsarcat

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  • in reply to: My Report Card(CT Results) #21089
    salsarcat
    Member

    Hello Jeff, I read your posts with much interest and appreciation. That is not the best news but there is some good stuff there, that your liver is OK and other organs are stable. Sounds to me like a wise decision to take the break and then try the other treatment (EFT) that interests you. I will read up on that, hadn’t heard of it before. Sounds like your physician is perceptive and supportive, as you are too.

    in reply to: Mom just diagnosed #21126
    salsarcat
    Member

    Hello Wests, so sorry your mom has gotten this news….and I see from reading your follow up posts that you are looking a little further into comparing doctors’ opinions. Although the seeking out can be exhausting, with no guarantees, I’d avise looking for a second opinion on the surgery. My husband was given almost exactly the same words…and told no surgery possible, but we did some further consultation in Seattle after I made calls to MD Anderson and Memorial Sloan Kettering…and those were way far from us. But as it turned out whoever was helping us at one of those med centers said try to get in at Seattle Cancer Care Alliance, because actually it is the same kind of comprehensive center. It turned out that the oncologist my husband saw had just moved up to Seattle from MD Anderson in Texas. He took a lot of time with my husand, had more tests done and advised trying one type of chemo…which didn’t make any changes, but then as it turned out a surgeon in our hometown after reviewing his records was willing to give the operation a try. Since every case is different, who knows what could happen with your loved one, but one thing I am 100% sure of is that if my husband hadn’t gotten further opinions, had just taken the first diaganosis, cancer of unknown primary, and had gone from me by now, the thing I would be asking over and over is “what if we’d at least gotten more opinions?” Add to that, each physician has a unique base and may notice something different in the results. If you get a few viewpoints, and they agree on most but with some variations then you feel like you have choices. It’s worth asking for other reviews of the case, and distant places can do some of the reviews of the scans and tests from a distance…you don’t have to go there right away. Keep asking until you are satisfied you have all the info you need to find help for your mom, and also take rest breaks in between. What I remember is the constant questions, that I had or doctors had, and the scheduling and emailing, at one point I thought I would literally come unglued, unhinged….etc. Every moment of my day was about what would the next dr. say. My husband was so stunned he could hardly function. Eventually we started taking day trips/ time-outs, even if just in town or on the back porch. Well I’ve gone on long enough. I sure feel for you and your mom and wish you the best and think you are doing a good job of following up on your questions.

    in reply to: Should we move? #18426
    salsarcat
    Member

    I haven’t been here in several months…but reading through my post in January and the follow ups people wrote is so uplifting. Because, we did it, we are in our new house, have been here a month and my husband is comfortable, has his TV room, his collections set up, all the things that were “home” to him are here, and the location is 2 minutes from two grocery stores, a suburband office of the major clinic downtown, a pet clinic for our two cats, post office and car wash about three blocks away. Best of all, the surrounding area near house has pine trees, a hilly bluff to the west, birds and squirrels in the yard, and plenty of room to add in plants from our old place. We haven’t solid it yet… DH took charge of hiring painters, cleaners, new carpet, so his depression lifted as he had a project to direct. Next will be the estate/garage sale to sell off lots of items we aren’t bringing. We qualified for a regular homeloan (no “creative financing”) and since the old house had been paid off for a few years, it was scary having a payment again, but when the old house sells, we can refi or pay off the loan. There were some rough spots along the way…AFTER we signed the closing papers, my husband got anxious and non communicative and finally told me that I “forced him” to buy the house. He was the one who said “let’s make an offer.” I spent a lot of time talking with the counselor at cancer care who described to me a process of grieving for the old house, how people have to work through the relationship they had with the place they are leaving…that helped me to see that maybe Tom’s reaction was not uncommon. I went ahead and moved a few items to the new house and said he could take his time…if his next scans showed something bad, he could decide whether to stay in the old home or not…we could always put the new place back on the market. Yeah we would have taken a loss, but this possibility seemed to work for both of us. I felt kind of trapped too…and then after he got some good news on his scans, I started crying off and on for weeks over leaving the old place. But we have made our peace with it. Our new home is in a quiet neighborhood but with access to main roads that go right to downtown and hospital areas. My husand has a “job” now which is going through all the boxes and bags that he moved by himself, little by little in his pickup on days he had some energy. It’s taken us four months to move, and we are not done yet. He can go out to the attached garage and sort through things, and we keep finding items we’d forgotten about. Now he’s planning a yard sale at the new place. Well this is kind of long, but I just wanted to update and say thanks for listening and to all who are considering a move, for us it was worth the upheaval to be in a location where we are connected to the community. Whatever happens next with my husband’s cancer, we do have a new chapter to our story—the adventure of the move—and that has made me feel more courageous. Last winter when the snow was so bad, I was becoming addicted to looking for houses online…got worried about myself. But maybe it was just my intuition saying git while the gittin’s good. My anxiety level is down so much, and my husband’s behavior says “i’m happy we did this.” Of course he hasn’t SAID this, but I know the signs.

    in reply to: Recovery from liver resection and time to next chemos? #21070
    salsarcat
    Member

    Hi Joyce I haven’t been here for several months but right away saw your question about liver resection…My husband had a resection Jan 2007; he was weak and didn’t have much appetite for several weeks. Was in the hospital 10 days. After he came home, I and friends who came over would have to remind him to eat or drink. One nurse who helped a lot with the info she gave said that people with this drastic surgery plus all the anesthesia after effects, for awhile their hunger and thirst seem to be disabled. So we have to keep offering little bits of whatever they will eat or drink, and water on a schedule. My DH couldn’t drive for a couple of months and even then it was just around the block, then a few blocks. We would go out for walks and each day go just a little bit further. The drs didn’t advise chemo as the follow up tests didn’t show anything but a lung spot that had been there a long time and didn’t seem to be growing. He did have radiofrequency ablation to that spot six months later, and then rfa again this past March. Your post got me thinking back to those rough post-surgery weeks, and how I worried about what he was eating. He would go through phases of not having much appetite for a year and even now occasionally he doesn’t feel like eating anything for dinner except some soup. I hope your husband continues to gain strength…From our experience the lack of appetite is normal and as long as he will take some of what you offer in the nourishing food and drink, and you just keep at it, he will eventually regain appetite. My DH said that for months everything “tasted like the hospital” or just had no flavor, except for certain ice creams that he liked.

    in reply to: Things rapidly turning for the worse #18883
    salsarcat
    Member

    I’m sorry to read of your distress…your love for your dad comes through so clearly. I like to think of you helping with his computer. Something lovely about that statement…That you had a closeness with him, something in common to talk about. (My dad wouldn’t learn computers) May this time continue to show blessings among the sadness.

    in reply to: Staying Strong! #18770
    salsarcat
    Member

    Hi Christina, Thanks for your response…it is worth the time! Another thing I think about is what you mention….for the doctors to see the patient recover and thrive, that is a blessing for them too. Tom’s main oncologist, Dr. C with the original diagnosis had told us to take a trip if we wanted to, Tom would probably never have a chance again. He said some chemo might be possible but was not very reliable. So we went to Chicago in summer of 2006. Then after that we did a second opinion consultation at the University of Washington/Hutchinson Center in Seattle. Had a great consultation there… and the guy we saw had just transferred up from MD Anderson, the major cancer center in Houston (?) He also said the tumor wasn’t operable but had more ideas about what chemo might give some help. But it wasn’t until almost 6 months later that Dr. H, the surgical onco said he was willing to try to remove it. Every time we see Dr. H, he just beams, says Tom is one tough guy, “see you in six months.” Tom also had a radiofrequency ablation to a spot in his lung, at that young radiologist just loves his work, is full of positive energy, and works with lots of new technologies. He says is such an “upper” to see the tumors shrink with what they can do. Then back to Dr. C again, last time we saw him before Christmas, he was grinning and shaking his head, said, “Tom I never would have believed it, with your original symptoms, but here you are.” Cancer apparently just folllows different patterns in different people. Dr. H the surgeon did say that if he’d waited much longer the operation may not have been successful. The dr’s really do need to see that their work is having an effect. Also whatever Dr. H learned from working on Tom, he is a stronger surgeon now because of it…so all contributes to the common good. I am glad to hear that your Chucks enjoys his car work and club involvment. Those are best things he can do for himself, just continue “being himself” not the disease. Tom is at a lull in his hobbies, and fighting depression, is on medication for that. One reason I want to move back to town is that there would be close by places we could go, even just to the grocery store or nearby restaurants, short trips that would change the scene for him but not be too exhausting. Our brains need different things to pay attention to, to help them heal psychologically. Well I’m so glad to have met you Chrissy…feel free to email me about faith and spiritual things, I need a boost once in awhile.

    in reply to: Should we move? #18423
    salsarcat
    Member

    Thanks Carol for taking time to read my long post…sounds like you had valid reasons to stay put. The uncertainty of waiting for a buyer plus all the medical things, plus the kids. We have some differences in our situation…me wanting to downsize and move, him thinking “maybe” as opposed to “no” plus he is in a stable period now with his medical issues. Will need more help eventually…the house I’m going to look at tonight is right by the grocery and pharmacy we use plus some close friends are in the neighborhood. Maybe something about seeing it will help us think more in one direction or the other. I appreciate your story because I hoped to hear from anyone who was dealing with real estate/moving at the time of medical treatments. I hope things are going well for your husband. Even when they stabilize the ground always feels a bit shaky. We don’t have kids, but if we did I’d be considering the impact for sure. Thanks again.

    in reply to: Staying Strong! #18768
    salsarcat
    Member

    Hello Chrissy, so nice to meet you, and I read your story with much interest as the two of you had a similiar experience as we did. Now, we are in our 50s, and I am so sad to hear that CC attacks younger people…when you have so much ahead of you…so unfair. What I notice though is that your Chucks had surgery in Jan 2007 just like my Tom did and in same way he was originally told the tumor was inoperable, and then was referrred to a surgeon who looked at all the scans carefully and said he was willing to give it a go if my husband was. So here we are a year later…and Tom’s had no recurrence according to latest PET and CT scans. The surgeon took out the tumor and about 1/3 of Tom’s liver and some lymph nodes. Now about the anxiety; it just came in waves for my husband; the second six-month set of scans he felt even worse, even though the news was good. He couldn’t sleep for days before the scans and after his dr said it was OK to relax and have some good holidays, my husband could not shake his depression and finally went on anti depressants and anti anxiety meds and some counseling. He couldn’t shake the thought that “some day the news will be bad again.” He’s finally coming out of it and starting to get out of the house a bit, taking more interest in everyday things, although he has about 0 energy level. He also has prostate cancer. For me…I go through the “what if” ups and downs too. There isn’t any certainty except what you can create for yourself. I sure do feel for you. We are in similar boats on the same sea…Spend as much good times together as you can…find a counselor or support group where you can really open up and express your fears. It’s hard to know how much to reveal to your partner. I realized that my husband was keeping a lot of fear inside, seeming to be indifferent, but actually he was terrified. Part of that was from the news about the lymph nodes…almost all that the dr took out had no abnormal cells but a couple did. Over the months the fear of those “bad cells” floating around his body just took over. One thing that helps is do some things for yourself that have nothing to do with thinking about cancer, and same for Chucks, encourage him to have daily activities he enjoys that are “his” and don’t belong to the disease. Sometimes the fears will make me queasy and immobilized…but those times do pass. I don’t always read here at cc discussion, not as often as some people, but do check the board and will keep track of your story. I can sure relate to so much. Sarah

    in reply to: My Hospice experience was not the greatest….. #18863
    salsarcat
    Member

    Robyn my sincere condolences. You did your best for him despite what the “team” didn’t do. I am so glad you took the time to post, and also thecdr, thank you for saying that about reasearching earlier. My husband is the one with cc (but no current signs after surgery and follow up scans) However, he became obsessed with what his last days might be like…I’m not sure why this wondering took hold of him, but the good thing was that over the holidays at a gathering, he met a lady, a relative of a friend, who is a hospice director in another state. She spent a lot of time visiting with my husband which I sure appreciated because he was so depressed, and he said later, the best advice she gave him was to investigate the hospice services in town before he needs them. At the time I thought he was being to morbid and negative, but I realize this is my husband’s way of being knowledgeable and feeling in charge of something. There are two or three hospice groups in town. A painful subject and conversations, but we have to face them . Thanks for the info.

    in reply to: My beautiful Patty is at rest #17988
    salsarcat
    Member

    Dear Ted, I haven’t been at this board for awhile but would always read your posts. Thank you for the link to Patty’s memorial video. It was a privilege to see it and get to know her face and see what a beautiful person she was. I am so sorry for your loss.

    in reply to: When to choose Hospice? #18401
    salsarcat
    Member

    Is there a possibility of the doctor or social worker inviting your dad to meet with hospice workers or learn about hospice “in case he needs it later on although he doesn’t seem to need it now.” Could one of these professionals tell him/you “I advise all patients to talk to someone in hospice before they ever need their services.” Maybe this would open a door if your dad sees the hospice connection as not focused on his particular situation but part of the dr’s protocol. Then you could said that you agree as it would help you understand what hospice does and doesn’t do and who to call IF his health turned worse “later on.”

    My husband is in a similar situation…but—he is told by doctors “not weeks or months but maybe a year or a few.” But my dh just keeps wanting to know about hospice and death with dignity laws…has a hard time enjoying the here and now and wants to know all the details of the eventual. My husband is eating well and not in pain…his recent scans didn’t show anything new. So people sure have their differing ways of dealing with this. As much as possible, let your dad have his view of things…but do get all the info you can.

    Over Thanksgiving we had some friends over and they brough along a sister who is a hopsice director in another city. She invited my dh into some helpful conversation…she advised to get to know palliative care and hospice people before there is an acute situation.

    I feel for you and hope you have found some effective ways to deal with this dilemma.

    in reply to: Has anyone had Radio frequency ablation? #18396
    salsarcat
    Member

    HI Charlene, My husband had surgery on liver last January, but then had RFA on a lung spot four months ago. He stayed overnight in hospital though some people go home same day. Tom had a blood pressure slight problem (I can’t remember if it was high or low) most likely from anesthesia so that’s why he stayed the night.

    The procedure he tolerated easily, nothing like surgery. The radiologist sticks in one thin needle and the procedure is watched on screen. when the needle hits the target area, then the dr. pushes through the skinny needle some even skinnier probes that fan out and ablate, or destroy, the target tissue. This is done with radio waves…the effect is “cooking” the area. Then this spot gets inflamed. The first month scan, the dr said the spot always looks bigger rather than smaller…so don’t be surprised or worried. The surrounding tissue gets inflamed and the tumor tissue will die off. So far my husband has had two follow up scans. The area looks smaller. They monitor for 6 – 9 months. If the spot doesn’t disappear, he has the choice of repeating the ablation or having a surgical excision and biopsy.

    Overall it is a relatively painess procedure compared to surgery. There is stress on the body…but minimalized as much as possible.

    I found more info on RFA by searching for “Interventional Radiology.”

    Hope this helps.

    Sarah

    salsarcat
    Member

    Glad you got yours Jeff G. I just wanted to add that SSDI was easy to get for my husband…he filled out the paperwork and the dr did his part with the prognosis. At the SS office they told my husband that first he would get a letter saying he did not qualify for SSI as I am still working and we have a family income…but then after that he would likely get an approval letter for SSDI and sure enough he did and it was four months retroactive. What the SSDI is for those who may not know, it is really getting your social security money now, so Tom is receiving what he would have received later after standard retirement age. He was diagnosed with unknown primary in May 06 and after his surgery of Jan 07 got a more defininite diagnosis of CC. But it is a relief to have this monthly check for him…he earned it since he started working around age 16. The paperwork we got said his case would be reviewed in 5 years…which was sad and funny at the same time as it’s another way of saying “if you’re still around, we will contact you.” But he has been receiving SSDI for a year and a half now. So I guess they will contact him in 3 1/2 years. A long shot, but we can always hope. Even though it’s upsetting to fill in the paperwork, getting the $ is worth it, gives you one little bit less worrying about as far as the bills go.

    in reply to: Husband has CC #17196
    salsarcat
    Member
    val wrote:
    Hi my name is val, we found out six months ago that my husband has CC. When we found out the tumor was 3 1/2 inches by 3 inches. He started chemo five months ago, doing gemzar and 5FU. He had a stent put in the first month because the bile was not draining. We found out three weeks ago the tumor has reduced in size to about 2 inches and he had the stent taken out two days ago.
    I asked his doc if the chemo will make the cancer ago away and he said no that it would just keep it at bay….
    Has anyone out there had anything like this happen? did the chemo stop the cancer or did it end up coming back?
    The chemo makes him very tired and he doesn’t do much but sleep.

    so glad to hear that he had success with this chemo; the “at bay” is what my husband is liviing with also. I don’t know about the option of stopping the chemo and how long the tumor would stay at the smaller size, but I do think that is an option you should ask about. From what I read and glean from talking to others, chemo patients are given breaks and monitored through scans. My hub didn’t have any success with chemo so it is good news that yours had some response, that sounds so encouraging, but it would be nice for both of you if he could take a break. I know that’s not much help but just wanted to let you know I understand about “keeping it at bay” and at this point in time my dh and I are living with that as the norm. It gets tirning and frustrating but my husband doesn’t have nausea and has some days with a bit of energy and still can drive and go on short outings. If he was on chemo I know he would not be able or willing to.

    in reply to: The Value of a Good Physician #17179
    salsarcat
    Member

    Thanks so much for saying this, Bill. Now reading your post I see I was thinking along the same lines in the post I just made a couple of minutes ago in the other thread. I was kind of long winded, I know, but it was all to express what you say here about the value of a good physician, one you trust to know the intricacies of your illness and your person.

Viewing 15 posts - 1 through 15 (of 34 total)