EastCoastLadi

Just when I think I'm going to be alright, something happens and bam! I lose it. It's been a rough week, but today was supposed to be a happy occasion, my nephews' b-day, he's 6. All the kids, my kids, my family, a big bouncy moon-walk thing, pizza, cake, music, talking..but then I lost it. All over a little thing, my sis needed a ride home, I first said yes, but that would mean 2 trips for me, but then I thought...I'm so so tired, I have got to learn to say no..I can't be taking care of EVERYONE! . So I said NO. But I felt aweful because.... My husband was at home, he wasn't here with me, with us as a family. He had a very difficult week, platelette transfusion, he's exhausted, agitated, depressed, and of course he's upset and I bear the brunt of it... But today, I saw all the life around me, and thought of what lies ahead for me and my girls...that I should be getting used to occasions like these, coming by ourselves without my husband, their daddy. The aloneness, also thinking about what was I coming home to tonite..would my husband be alright?, Would this be another rough night? Thank goodness, he's sleeping. For all you have and/or are going through times like these, I don't know how you all do it... I guess we all just do... Grace

Aliboo, He should definitely contact his doctor/ or whoever is on-call and let him/her know that the percocets are making him ill and ask for a prescription for another medication, trust me it's easy for the doctor to do...I'm very sorry that you are both going thru such a rough time, but know that this is a wonderful place to come to for support. Grace

Gwen, I agree with the others, call that damn dr. or whoever is on call and give them he**!....hey at this point, it's way past being nice and compliant, be persistant, I know it isn't fair, but at the very least your dad needs to be made comfortable and w/ no proper medical help at home, there's a problem there. Like Randy said, Social Services, patient advocacy at his hospital, heck is there another hospital nearby, that's what happened w/ me and my dad. I'm praying for you. Grace

Judy, I am sorry about your diagnosis, but you have definitely found the right place!!! So many wonderful people, full of great insight and information....Welcome. Grace

Please pray for our friend Tonya, my husband met her several months ago during their chemo treatments. I saw her today at the cancer center, and am very sad, she is not doing good at all. She is only 38 years old and has metatastic breast cancer and is in so much pain right now. Her fight has been a difficult one since I met her, she was living in a homeless shelter with her 3 year old daughter, getting away from an abusive relationship. Now she is in a long-term nursing facility and her little girl is with her godmother. She told me she gave guardianship to her godmother and her daughter now lives about an hour away. But she is a fighter! like so so many, but she knows she doesn't have much longer and is very upset she can't complete certain things right now, such as financially and dealing with her husband about her daughter. I didn't cry in front of her, but held her hand in mine as she held a picture of her and her little girl. I pray to God to take away her pain, I told her to have faith and that the doctor will take care of her pain..... Grace

Linda, I am so sorry about what your mom is going through. With nature of this disease everyone lives from moment to moment. I know with my dad when he was hospitalized with his cancer, there were moments he was incoherent, his was a combo between the cancer metasizing to his brain and the incredible amounts of meds. he was on, he lived for about 2 months after this. is it the cancer w/ your mom, I wish I could tell you, but she is being taken care of now. And I completely understand about running around and getting things taken care of before it is too late, I ran around so much in the final months for my dad... I'm praying for you and your mom tonite... Grace

CONGRATULATIONS KATIE & RICK!!!!! ..A well deserved honor!!! Grace

..oh Carleen, this certainly isn't fair at all...I hate this stupid cancer!!!, I know about trading places with your husband, I've thought that many a time too. ...Don't give up, I'm not, we're not, I'm going to put my thinking cap on and do some investigating for you....... ...Please know that we are here for you right now...no one wants you or Keith to suffer....and please, please, let me know if there is anything else I can do for you... I'm praying so hard right now...God please hear my prayers.. Grace

Karen, I can only answer for my circumstances, heck! I go to my husbands' onc., radiologists, and other specialist appointments. Sometimes I will go to his tests, if I really need to be there. But since the cancer center knows us pretty well by now, they're good at making appointments around our availability, and of course now with the kids getting out of school for the summer, we will just have to be a little more creative....and btw..even though my husband doesn't like me going w/him sometimes, I ask alot of ?'s, but I feel that I can hear and understand some things he can't......and these drs. really do talk to me as well, in the beginning of all this they thought I was a nurse or in the medical profession, because of what I knew.... Grace

Carleen and Keith, I'm sending good positive thoughts your way today!!! Grace

Cindy, I'm so glad that your dad is comfortable and in a very peaceful and relaxing place. The respite sounds absolutely beautiful!....keeping good thoughts for you and your dad! Grace

...Sending out prayers of hope and love and lots and lots of good positive thoughts for Jackie! Grace

first thanks Chris! Secondly, Shirley, I was wrong about NEMC and cyberknife, NEMC does gammaknife, sorry about that, I'm still learning myself, but I think the biggest difference is the gamma is more for the brain, whereas cyber can go elsewhere.... Keep us posted Shirley, Grace

Shirley, Hi, I'm finally responding to all my fellow Mass friends!.... So you're dad is at NEMC, I know NEMC very well, but I thought they have Cyberknife there too, in fact I'm pretty sure because the Dr. that is the head of it, was a Radiologist at where my husband goes for treatment. Also if you're going to BI for treatment, there is a very good thorastic onc. that my husbands' onc. consults w/. we've been to him 2x's and he has told us don't hesistate to come back to see him, and also my husband onc. and him were former colleagues some yrs back, so they have done alot of consulting back and forth about my husbands' treatment. Hang in there Shirley. Grace

Charlene, I totally understand your feelings, my husband too was dx w/ ext sclc, and I know about all thoses statistics, but like my husbands oncologists tells us we aren't treating him like a statistic. Do you know what type of chemo your mom is going to have, you can look at my profile to see what my husband has gone thru. If there is another thing I can tell you, the staff at the cancer center where he goes is absolutely wonderful, just like a second family. I will tell you, if you need to talk to the oncology social worker, please do, even your mom, because it is such a big thing to be going thru. But my husband is still hanging in there..... , but now with all these new drugs to help combat the side effects of chemo are just remarkable. I know that your mom and you and your family will be fine... Grace

Beckie, First I am very sad to hear about your mom, my husband just finished with WBR, and up to this point, nothing of serious consequences has happened. And as far as the lack of communication with the drs., please whatever hospital they are at w/ your mom, go to the social worker, and/or the patient advocate and tell them, of your concern for the lack of information, and the miscommunication the drs. are having with the family. Please do this, even if you are going to get the 2nd opinion, you know it is up to the drs. to inform you, and they need to understand that they need to tell you all in a way that everyone can understand. I wish you all the best and pray for a good outcome for your mom. Grace

Lori, unfortunately there are some tumors that can grow out, my only experience was with my dad, and he had tumors on his back which you could see, but I don't know about your mom, and especially where she is now, she could of done something days ago, and since she is ill, it just may take longer to heal...so I'm thinking of nothing but a positive outcome for your mom. And I also understand your frustration with the nursing home, and their staff and drs., but please if you have any problems with her stay there you definitely want to talk to the director of social services, and the director/administrator and let them know of your concerns. Take care of yourself, Lori. Grace

I am very sadden to hear about your dad, I all to knowningly understand about losing your dad to cancer, I lost my dad last year, but please take some comfort in knowing that your dad isn't suffering anymore and is now at peace. I am sending out my prayers to you and your family today. Grace

ztweb, my husband just finished up with wbr about 2 weeks ago, he had gone for 20 rounds ( 5x week for 4 weeks), (u can see his profile ) the worse side effect he has had with it up to now is he has a very bad burn on the back of his neck, he is now using silverdene cream, and it seems to be working. Just to let you know his experience w/ it was that the first visit was a "mapping" of the head with small pinpoints w/a marker ( not permanent) and then his treatments were very quick he was in treatment no longer than 5 - 10 mins at tops. When his treatments did go a little longer it was because they were x-raying his brain. The radiologist told him that we will come back in a month ( now it is 2 weeks and will probably do an mri of the brain) to see if the mets have disappeared, he said that the radiation can take up to a month to take effect. Also we were told that "radiation never forgets" so my husband now has to constantly wear a cap outside even if it isn't sunny and also always wear suncreen. But so far he hasn't had any real memory issues, except he always seems to forget what I say to him....but he did that before all of this!!!! Grace

AWESOME NEWS TRACY!!! lets keep the good coming!!!!! Grace

Donna, Welcome, you have definitely found the right place, I'm wondering if you are anxious about your petscan, perhaps your onc. could give you some medication, ( like valium or adavan ) to relax you. Grace

Randy, I am sending my prayers and good thoughts for your dad tonite. Grace

Carleen My prayers are going out for you the Keith, it does suck that he is going thru so much, I hope that maybe this new development there is something that can be treated with some medication, perhaps a diaretic, or steroid or some other type of med. Keith is too young, but we all know that he is a tough cookie, ( my husband is alot like that too ), I know it is so hard to keep up the positive attitude, but if there is anyone that will persevere, it is you and Keith..... Grace

Lillian, I know that you must be feeling so overwhelmed, and of course with 3 little ones it makes it even harder, but your children are also a cause for your strength as well. I know it is easy to panic, and be in disbelief, but you will learn more about what is going on with you, and now that you are here there are many people who will educate and help you in your journey, and yes, it is a journey, but know that. You are alot stronger than you give yourself credit for. And we are here for you. Grace

My prayers are going out to her and her family Grace