caitwing Posted June 1, 2005 Share Posted June 1, 2005 Hello out there. I am new here, and just learning my way around. My new husband, Aaron (Married May 26th, 2005) was diagnosed this week with a Stage IV adenocarcinoma, most likely a Lung Primary, with an 8cm tumor in his lower left lobe and a significant plural effusion. There seem to be several metastic lymph nodes involved in his mediastinem area, and we are waiting to see if a biopsy of his esophagus is necessary to determin possible involment. Aaron is in much pain, as his thoracic cavity continualy fills up with fluid. We are probably going back to the hospital today to see about draining the fluid, and taking steps to put in a cathater for continued drainage. Because Aaron has been so strong with an extremely high pain tollerance, his whole life (an avid martial artist, yogi, and personal trainer) his cancer advanced to an aggressive stage before we even realized it was there. Our entire lives have changed overnight- we've gone from a couple of meat eating rock n' rollers to vegan/macrobiotic home-bodies. His parents, my new in-laws, are living on my couch and his brother is moving here from Vegas this weekend. Although I barely recognize our lives at the moment, I will modify whatever I need to and do anything and everything in my power to keep him around as long as I can. Since this is still new to me I was wondering if anyone out there had some advice............I do not know anyone else who has watched a loved one go thru this, and I feel very alone. ~CMW Quote Link to comment Share on other sites More sharing options...
shelliemacs Posted June 1, 2005 Share Posted June 1, 2005 welcome to you and your whole new family. You just took on over 2000 more relatives here, who know exectly how your going to get through this journey. ONE DAY AT A TIME. thats how you do it. This is a long hard journey, many ups and downs. many turns and twists, many tears and some smiles. But you will never go it alone. We ALL are on this road with you. There isn't a question you can probably ask that someone here has not gone through or can give you an answer too. Personal advice, go to every appointment, ask questions, take notes, get smart about treatments and push for those treatments. Doctors sometimes don't take patients lives as serious as the patient does themselves. So sometimes you have to be the aggressor and definitely the advocate for your husbands treatment. There are those on here who have survived 2,5,10, over 20 years with LC and unfortunately we do loose people too. I lost mom in August 2003 at 61, dad in June 2004, and my father in law just over 1 month ago all to Lung Cancer. My sister is still battling cancer but hers is breast. I am sorry your here but glad you found us. Quote Link to comment Share on other sites More sharing options...
DebsSky Posted June 1, 2005 Share Posted June 1, 2005 Hi there and welcome, Sorry you had to find us, but glad you did. This is a group of caring people that will stand by you thick and thin. I agree with Shelly, knowledge is definitely power. Get well informed and read, read, read. That is your best defense and one that will help you through. There are alot of very knowledgable people on this forum, as well as, the "Ask The Experts" portion that are going through it. Stay postive and know that it can be beaten. Love and Prayers, Deb Quote Link to comment Share on other sites More sharing options...
Don Wood Posted June 1, 2005 Share Posted June 1, 2005 Welcome to the board. So sorry you and hubby and your families have to go through this so soon in your young marriage. LC can be hard to detect early, whether you have high pain tolerance or not. My wife started losing function in her left hand, and that is what signaled she had a lung tumor on her spine. Keep us posted on progress and let us know how we may support you all. Don Quote Link to comment Share on other sites More sharing options...
ginnyde Posted June 1, 2005 Share Posted June 1, 2005 Cait, Welcome. This is not an easy journey, but your sweetheart is young and otherwise healthy which will definitely work in his favor. As soon as you have the information, post his medical history regarding this lc in your profile and update it as things happen and change. This will help us help you with information about side effects etc/ Hold tight, the beginning is the toughest. And become his advocate. Try to go to every appointment, don't be afraid to ask questions, basically fight for your guy. Keep us posted. Quote Link to comment Share on other sites More sharing options...
Justakid Posted June 1, 2005 Share Posted June 1, 2005 WOW! What a change over night! I am so sorry for your news! Advice..........one day at a time, if that doesn't work.....one hour, one minute, one second. Keep us posted and come back often, everyone here is so helpful! Quote Link to comment Share on other sites More sharing options...
cindi o'h Posted June 1, 2005 Share Posted June 1, 2005 Hi Cait and hubby.. newlyweds is right! Welcome to the place no one wants to be...but we are all very glad to have you here. We will help you with anything that we can. At one time or another there will be someone who has been in your very same shoes. The earliest days are the toughest, emotionally. Once the shock of having lung cancer wears off, and the stage is set and a good plan in place, things will get better. I promise you that. Remember that all of this is very doable, both for you and for your husband. There are quite a few regular caregivers on board who can offer help and support whenever you need it. Truly, I will be looking for updates on how he is doing and what his treatment will look like. Cindi o'h ps... does the vegan diet dictate no alcoholic beverages too? I run the bar mostly and it sounds like you could use a little bump right about now...! But, if you are off the stuff, I suppose I could stock some wheatgrass for you! Quote Link to comment Share on other sites More sharing options...
Frank Lamb Posted June 1, 2005 Share Posted June 1, 2005 Hello and welcome to our support family.You will find many caring and knowing people here.Sorry you had your life turned upside down overnight. The very beginning of this is the hardest time,not knowing,and waiting for tests and results, etc.Once you have a team of drs. and formulate a treatment plan it doesn't really get better but you can direct your mind to fighting it and surviving it. And there are a lot of people here surviving it. KEEP THE FAITH Quote Link to comment Share on other sites More sharing options...
Treebywater Posted June 1, 2005 Share Posted June 1, 2005 Just wanted to add my support and say Welcome, We're here for you, and like everyone said... keep taking one day at a time, one foot in front of the other. --Val Quote Link to comment Share on other sites More sharing options...
Patkid Posted June 1, 2005 Share Posted June 1, 2005 Welcome! Well, what a shock for you! How grossly unfair! Hebbie (a fellow member) is really up to speed on microbiotics.........see, already, a new friend. and there are lots of us all here for you and your new hubby. We all care and we all 'get it'. You will feel better when there is a tx plan in place and you can know you are making progress against the disease. Take care, honey, and know that we are here for you guys..........anytime at all. From an old Rock n Roller................and a neighbor............we live in Rockford. Pat Quote Link to comment Share on other sites More sharing options...
dadstimeon Posted June 1, 2005 Share Posted June 1, 2005 Welcome and sorry to hear that. Been given some great advise. Stay with us and keep us posted. Prayers for the best. Quote Link to comment Share on other sites More sharing options...
nancy c Posted June 2, 2005 Share Posted June 2, 2005 Oh Cait-I am very sorry to hear your news--but you know what? Take all the previous advice these wonderful people on this site give you. They have all been my piece of heaven and comfort. These are the most wonderful caring people around this great country. They will be there for you every hour--every minute of the roller coaster ride you and hubby will be on. Think positive and pray-and plan on fighting like hell to get rid of this demon.God bless you and I wish you the best. Please keep in touch. You have come to the right place! Nancy C Quote Link to comment Share on other sites More sharing options...
Maryanne Posted June 2, 2005 Share Posted June 2, 2005 Hi Cait, This has to be the most difficult time of your lives. You will begin to accept this and will be able to cope. We all have been through this so we know where you are coming from. My heart breaks for you guys especially being newly married, how unfair that is. Life has a way of knocking us off the road we are traveling, but we have to get ourselves back on the road, back on course, moving again in the right direction. You are lucky, your husband is young and healthy that is such a plus with this disease. Please have faith and know that you will get through this. He seems to have wonderful family support and that is crucial for his recovery. And HE WILL RECOVER!! You better believe it. Find good doctors and listen to what they have to say. If you are not comfortable for any reason, get a 2nd, or 3rd opinion if you have to. LC is NOT a Death Sentence. You will realize that as you read so many posts here from people who have survived and beaten the odds. You husband will also. Being young and healthy ( besides the LC) again, that is such a PLUS, I cannot stress that enough. Keep us informed on his progress and test results. We are always here for you for support or any information you are seeking. Please know the pain you are going through will lessen. Believe, me I am a caregiver I know what you are going through., it will get better. This is the worse fear you will face, finding out he has this dreaded disease. Prayers sent to your husband and his wonderful family for strength to get through this. Maryanne Quote Link to comment Share on other sites More sharing options...
Snowflake Posted June 2, 2005 Share Posted June 2, 2005 Cait, Welcome to the family. Sorry you had to join, but glad you've found the support. One comment about the new diet - have you discussed it with his doctors? That's quite a major change in dietary intake, ya surely don't want to shock his system with healthy food (and red meat isn't evil, it supplies protein and came highly recommended by my thoracic surgeon after my surgery for healing). Let his doctor know of the end to rock and roll and birth of soy milk and wheatgrass... Take care, one day at a time. Becky Quote Link to comment Share on other sites More sharing options...
SBeth Posted June 2, 2005 Share Posted June 2, 2005 Welcome. Yes, the road ahead is going to be rough. Some days will be much better than others. We will be here for you. Please let us know if you need anything and keep us posted on treatment plans. Love and prayers, Quote Link to comment Share on other sites More sharing options...
Ann Posted June 2, 2005 Share Posted June 2, 2005 Cait, I'm just chiming in here to join others in welcoming you to our wonderful circle of friends. You will be amazed at the amount of support you and your hubby will find here. Everyone is here because , in one way or another, they have experienced what you are going through. Please remember that we're always in your corner, praying for you and cheering you on! Quote Link to comment Share on other sites More sharing options...
J.C. Posted June 2, 2005 Share Posted June 2, 2005 Cait, I am joining the welcoming group, you will find a lot of good knowledge here and some very good shoulders, should you need them. Keep us posted. J.C. Quote Link to comment Share on other sites More sharing options...
mhutch1366 Posted June 2, 2005 Share Posted June 2, 2005 Cait, I strongly agree with Becky, tell the doctor that you've altered your diet. The diet you currently are on may not be enough to support your husband through treatments and stress. It's a hard diet to adequately maintain for a healthy person, you need to be aware of so much more!! I wish you two the best, and I will keep you in my prayers... XOXOXOXOX MaryAnn Quote Link to comment Share on other sites More sharing options...
Rachel Posted June 22, 2005 Share Posted June 22, 2005 A big ditto to all that Shelly said. I couldnt have said it any better. And don't forget,never giveup. Strong prayers & best wishes coming your way. Rachel Quote Link to comment Share on other sites More sharing options...
bunny Posted June 22, 2005 Share Posted June 22, 2005 100 time, yes - one day at a time is the way to go. good to meet a couple of fellow rock n roll yogi's, but so sorry you have to be here. please, come here for all the support you need - there are AMAZING people here. case in point: nancy lost her husband yesterday, and she's here today to welcome you. unbelievable. I have discovered, after flipping out for a couple weeks, that am exactly as tough as I thought I was before my mom's cancer came back and I can get her through this, but that I need the support here (and, obviously, from the people in my life and my spiritual life) to do it. this site is also a bottomless well of information, recommendations and advice on diagnosis, treatment and care-giving. again, I am so sorry you guys are going through this. not what you imagined when you got married, I am sure. keep in touch, and we're praying and pulling for both of you. xoxo amie Quote Link to comment Share on other sites More sharing options...
caitwing Posted June 22, 2005 Author Share Posted June 22, 2005 Thanks for all your support guys. After a month of tests at Illinois Masonic, the University of Chicago Hospital and most recently at the Dana-Farber Cancer Center in Boston, Aaron and I are still awaiting his definitive diagnosis...we hope to have one by this afternoon. I think the waiting is the hardest part for us both. Our patience is running thin, as we are anxious for Aaron to start some kind of treatment. His condition is worsening daily- it is becoming more and more difficult for him to breath, and he is less and less inclined to eat (his tumor is pressing on his esophagus). It's hard watching him suffer, and I just hope we here something soon. Peace & Love, Caitlin Quote Link to comment Share on other sites More sharing options...
daggiesmom Posted June 22, 2005 Share Posted June 22, 2005 I just read your post and wanted to welcome you and your hubby. I know today, waiting for a diagnosis is very difficult. Please let us know how it goes as soon as you can. We're all here to support you in any way we can. Take it one day at a time, ask alot of questions of the doctors, write down anything you're unsure of so you can ask again. Keep the faith Joanie (3 1/2 year sclc survivor) Quote Link to comment Share on other sites More sharing options...
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