mhutch1366

Janet, Rest as well as you are able, and feel better soon. Prayers are with you and your family. You are not alone -- you have all of us here. XOXOX MaryAnn

Hi Kim, Welcome aboard. I too had back pain, I had a pancoast tumor (nsclc, grew into chest wall). After almost 2 years of misdiagnoses and PT and orthopedic drs and trigger point injections. somebody bothered to listen to me about an X RAY!!!! When they found cancer, well, then they gave me PAIN meds. Funny thing about large doses of morphine and such, they can reduce peristalsis in the intestines to almost nothing, and next thing you know POOF!! perforation. I had the same thing happen to me. I went to the oncologists to arrange for chemo and essentially collapsed in his office, followed by emergency surgery that night. So, the entire time I had chemo and radiation, cancer surgery, and more chemo, I had the blasted ostomy. I finally had it reversed 7 months later. I discovered in one of my later hospital bouts (respiratory infection) that it (perforation and ostomy) is not an infrequent occurrence. Tell your dear mother to hang on, I recommend that she try to find the ostomy supply company that offers the little gas relief valve as an optional product. Made a world of difference in my comfort level, knowing the bag wouldn't pop off. I also loved sweat pants and overalls. Hard to believe looking back that I endured all this without blinking, but it's amazing what you will do when you have to. Tell your mom she's not alone, there are a lot of us out here. Keeping you in my prayers, XOXOX MaryAnn

(gasping for air)...I haven't laughed so hard in months...... Due to my prosthetic chest wall on the left, which is supposed to replace the 5 missing ribs, I have one that points forward (unaltered) and one that distinctly leans to port. My favorite visual joke on this is, imagine if my surgeon were a fan of Picasso's (remember his eye painting?). I am soooo lucky.... The only bra I can wear is a sports bra, otherwise with no collarbone the strap falls down and drives me nuts. I really like the one about the knife fight and leather halter. Mine, I just figure for a shark bite.. and he spit it out. For all I care he can have it, cause he could bite it off now and I wouldn't feel a thing... (still no nerves in that quad). Enjoyed spending the time with you, ladies.... XOXOX MaryAnn

Just call me... Loopy Chickenface???????????????????? lolol MaryAnn

Karen, That is GREAT news!! about NED. Sorry about the pneumonia, I know it makes you feel washed out, but better pneumonia than tumor. I believe the doctors want to be proactive and ensure that what they can't seed (ie, micro cancers) are also taken care of, since you responded so beautifully to chemo. I know of a few other cases like this, and they are truly miraculous. What is amazing is that you apparently managed to resorb the large tumor (did I read you right?) completely. Remember that chemo and radiation both tax the immune system, which makes it harder to get over the pneumonia. I remember my surgeon asking me, when I told him I felt like sh!t three months after the surgery (had been hospitalized for respiratory infection and facing another surgery for ostomy reversal) " would you rather have your tumor back?". Congratulations on the good news!! and take care of the pneumonia. XOXOX MaryAnn

Lauri, I will keep your mother in my prayers today that the surgery is successful and that you get some good news about how to fight this beast. XOXOX MaryAnn

JC, I am truly sorry for your loss. 43 years.... WOW! What a love story!! XOXOX MaryAnn

Jay, Hang tough, chin up.... if anybody can beat this, YOU can. Courage is having the faith to believe.... Sending quick prayers straight to God on your behalf. XOXOX MaryAnn

Hi Ray, I understand your other post better in this light as well. I always get jittery before the tests. It is a natural phenomenon. But in a way we are blessed, being given the gift of looking death in the eye. I had a very close friend who was killed suddenly in an accident, and it occurred to me much of what would have flashed before my eyes would have been regrets. I thought, that's no way to have lived. I started making some changes in my life then, before I even knew I had cancer. This message was brought home to me again this weekend, a friend's young husband, not even 40, dropped dead of a heart attack. No warning. No chance to tell his wife of just two years how much he loved her. No chance for her to see it coming. Dubious blessing though it may be, we have all been given the chance to tell our loved ones how we feel. That is no small gift. May we all make the most of it, our foreknowledge and our time here, however long it is. In my book now, the little blessings are the biggest. I'll be praying for you, and hope you can join the empty head club next week. Bet your boys are proud of you. Take care of yourself and your family until then.... Warm regards, MaryAnn

Carleen, I agree with what's already been said. When your doctor stops fighting for you, find another doctor. Find a 3D support group, it really helps, one that includes caregivers and real discussion, not just invited lecturers. Call NIH/NCI and shake that bush, see what comes out. They have some phenomenal doctors there, and clinical trials funded all over the country. I realize now how fortunate I was/am to have the physicians I do have. They have always had an optimistic outlook. If one thing didn't work, they had a next thing in mind, like chess, always thinking a step ahead. I remember seeing a woman in the oncologist's office, who had been with that doctor 11 years. When one thing quit working, they tried something else, and sometimes remission/stasis was good for a year or two, sometimes much less, but they were always looking to buy the time until the next treatments came thru or into clinical trials. Eleven years!! I know how Keith must feel, I would not wish my loved ones to have to see this or endure this. It's much easier to have the cancer myself. I was no longer married, but I know it would about kill me to see my folks or my kids with this nasty disease. I can't imagine how you must feel, but, kiddo, keep your chin up. You gotta do what you gotta do. Be strong. When all else fails take hot bubble baths and naps. I took a lot of naps. I also wept in the tub for many an hour, but I got out eventually, and got on with it. Honey, you and Keith are in my prayers. Find a doctor who will fight to help you fight.... they are out there. and please try to call NCI and see if they can help. At that time in my life, I also found great solace in my faith. If you have a strong belief in something, now is the time to take it out and dust it off. Remember, miracles happen every day. Count the small blessings... and remain guardedly optimistic. Long distance hugs, MaryAnn

Hello Sue, Welcome to the club! I am glad your mom has you to worry about her, no one should be alone when this kind of stuff happens. Check with the doctor about the advisability of antidepressants, because it is a true roller coaster ride after initial diagnosis. I am a 3 year survivor of IIIa/b nsclc, and I found antidepressants and counseling to be absolute necessity. This is a great source of support, information, and a shoulder to lean on or at least vent to.... Best Wishes to your mom and yourself. Remember, miracles happen every day. MaryAnn

There's something better than instant breakfast called Scandia Shake that the NCI radiation oncology department gave me to help with weight loss. It's good for about 650 -700 calories made with milk, I used to make mine with 12 oz not 8 oz of milk, and then add ice cream and whip it up pretty well manually. I would get 3 glasses a day out of it. It's expensive,I saw it at Giant 4/$10, but I am sure you can find some agency willing to help. If not, email me / pm me with your email and we can arrange I'll send you some. Granted, eating hurts, but not eating is no good for you either. Eat the stuff that counts!!!. MaryAnn

That was the chemo combo I was on and it's tough good medicine. Killed the tumor I had dead. Sorry to read about the neurological difficulties. Nerves on the outside, say, my arm for example, will/can grow a millimeter a day, which is slow, but they do heal to some degree. Hang on,and pray for improvement, slow and steady. I still tremble on occasion. All in all, it's a minor point. Hugs, MaryAnn

If you can give support without needing acknowledgement the best vehicle in the world for that is good old US MAIL. Second to that is the answering machine. Believe me, a heartfelt letter with no one hovering for an immediate response is a lovely thing. That's just my two cents worth today. MaryAnn

Gleeful!! Not cancer, just a nasty opportunistic infection. I kept getting Candida in my mouth and throat. Yuck!!! So glad to hear your good news!! and so very glad this is not a recurrence... Warm hugs, MaryAnn

Aside from drinking lots of water, the only other thing I can think of that would affect leg cramping would be maybe potassium levels. Ask the doctors if the electrolyte balance was okay -- sp. Calcium, Potassium, and Sodium. The homespun treatment is to eat bananas, which are high in potassium. Drinking lots of water will help flush the chemo out of the muscles, as will exercise like just plain slow walking if he can tolerate that. Hope he feels better real quick! Warm Regards, MaryAnn

Norme -- I'll be praying for good results from the scans,with toes crossed under my desk at work. Christy -- ASK for an MRI, if that will clear the issue up. If you feel the doctor is dismissing you because of the LC, then find another doctor who will be part of your TEAM to fight the cancer. I had the good fortune to have doctors who were all part of my team, gave 110%, and kept looking forward to the next option, should it be needed. They were a blessing.... truly. They helped me to keep believing in tomorrow. Prayers all around, that scans come back with best possible news, and all ambiguities resolved. Hugs, MaryAnn

Hi Cathy, I had a lot of trouble with esophagitis, and reflux. My oncologist had something he called "magic mouthwash" which had lidocane, maalox, benadryl, and something else in it, you could take a spoonful every half hour. I found it helped enormously in being able to swallow as well as sore mouth. Good luck to your dad. I believe there should be someway to reduce the vascularization of the tumor so it can be removed. I hope the chemo and radiation work. Hugs, MaryAnn

Hi Kristy, This is good news indeed. Necrotic is a general medical term for very dead tissue. Lymph nodes are little nets or filters that catch loose cells, such as would break away from a tumor. To have lymph nodes full of necrotic tissue or cell debris, (with no apparent sign of cancer or they'd have said so) shows that the chemo is very effective, as the cells the nodes are catching are dead dead dead !! Enjoy the good news, Warmly, MaryAnn

Andrea, I'm sorry your mother is upset about being taken off the study. She may either be very anxious about all this, and having to adjust to a different mix of chemicals, and she may just have the flu. Call the oncologist and talk to the nurses there, they can prescribe good effective medicines for nausea. I took one at home several times a day, can't remember the name except it was Z-----, and also was premedicated for nausea before chemo with atavan and ethyol. It was effective, at least for me. I know I did get very nauseated after any activity (like PT). Ask the doctor, he can most likely help make her more comfortable. I hope your mom feels better soon, MaryAnn

Sally, My exhusband had told the whole neighborhood and my children that I was going to die. Well, I fooled 'em!! I am a living breathing miracle as a 3 1/2 years survivor. I had a very grim prognosis for the type and staging. I was given a chemo/radiation combination that had only recently won approval after 12 months as a phase II clinical trial, and the tumor (13 pounds) was dead when they removed it. Had more chemo as insurance. Do not despair. Embrace the treatments and care plan whole heartedly, and believe.... your brother is young, strong, and otherwise healthy, and stands an excellent chance of beating this thing. Miracles do happen, every day! Keep your chin up, and let me know if I can help in any way. MaryAnn

Gina, I can relate. The first year I had scans (CT/MRI) every 3 months, and I was just waiting for the whole world to cave in. I got to one year, and got a clean bill of health, and scratched my head and said what now?? Does this mean I am going to have a LIFE? Maybe it's time to get that dental work done I've been putting off... and go shopping for new sneakers... It took a while for it to sink in, because in my mind I had been targeting 1 year and not thinking beyond that. Not deliberately, but that's what I did. I still get kind of wierd before my tests, which now are every six months. and I stay that way until I get the surgeon's report, which until now have been all good... and I pray they continue that way. My surgeon says the further along one goes without recurrence, the more likely one will stay without recurrence. I try to believe him, because he's seen much more than I ever will. I would get kind of numb and say a million Hail Marys in the testing rooms. But this, too, shall pass. The tests aren't really that long, and you'll talk to your doctor fairly soon afterwards. Good luck, and have fun with the milkshakes.... we've all been there... I'll keep you in my prayers, MaryAnn

Hi Diane, I had 8 bronchoscopies in 10 days after my initial surgery, the resected lung wouldn 't inflate more than 1/3. After the 11th day, they did another bronch and moved the drainage tubes, releasing a lot of fluid which apparently had prevented the lung from inflating fully. I had problems after surgery too, I couldn't cough. I had some nerve damage from the surgery, lost some nerves to my larynx as well. My upper left lobe (which was removed) and my left bronchial tube were irradiated, which means they don't sweep out the mucous well either. While they didn't say smoker's lung, I smoked for 27 years, so I'm sure that played a part. Does it get better over time? Yes, the nerves that were disturbed during surgery do begin to function better, your dad should develop a more effective cough, but like me, he will likely have trouble moving secretions out of the affected lung. One thing is to stay well hydrated, and do the breathing exercises the pulmonist is recommending, even if you hate them. They work. It should improve slowly over time, and in time your dad will learn how best to manage it. You're in our prayers, MaryAnn

Paula, Don't hold back on starting treatments. A second opinion or even a third is always good, as you may want a surgical option and have to scout around for a thoracic oncological surgeon who is comfortable with something large. My tumor also had invaded the chest wall, and was rather large -- 14 cm-- but there are surgeons who are capable of this, and there are chemo/radiation treatments that may well kill the tumor on site. You have to start someplace. Good luck to your dad on starting treatment, and I think it's great that you're so proactive about his treatment options. Good job! Warmly, MaryAnn

Hello Berisa, I also felt it harder to breathe if it was warmer than 75'F, or high humidity, and the "bad air quality " days we experience here in the big city really hit me hard. Thank goodness for air conditioning, I could actually breathe comfortably. I am very glad your dad is enjoying family trips and his exercising up the mountain. He sounds very centered. I always felt so badly for my caregivers, and other caregivers. It's bad enough to have this lousy disease, but to watch a loved one suffer through it must be awful. You please lean on me, borrow some of my strength to help you through. The video camera is wonderful. Enjoy each moment, each day as it comes. This is something having cancer taught me... tomorrow has no guarantees. We take our lives in our hands every time we go out in a car. So each moment is truly special if we take the time to live in that moment. You and your family are in my prayers. MaryAnn