<p>So agree with MomLive. My SIL has a notebook and tracks her husband’s brain tumor treatment. I suggest you give one to your husband. He may appreciate having something to “do” while he is there supporting you.</p>
<p>I also have no advice, only best wishes, but I am a “planner” like you, so I feel a bond :-). I’ll say a prayer for you and your family. If your battle takes you to Houston’s MD Anderson please PM me. I am just outside of Houston and could possibly help you there with logistics, supplies…whatever you might need.</p>
<p>" would add that you might want to get a notebook and carry it with you to each doctor’s appointment, hospitalization, radiation/chemo session, etc. Document every test, every drug, every procedure as thoroughly as possible as well as write down all the information you will get from various health care professionals. If you can’t do it, get your husband to take on the responsibility. A lot will be coming at you at once."</p>
<p>Actually, this is very good advice for all of us. It is amazing how many tests and procedures we start to have and forget. I started one with my folks and it has helped so many times!</p>
<p>If you have a friend or relative who will be available and up to it, I suggest that you ask him/her to accompany you to all appointments and record everything. So much information will be bombarding you that you may need the help. Perhaps your husband can be available and up to the task. My DH would not be the best for this job.</p>
<p>My DH, who cannot deal with anything emotional, was FABULOUS at the doctor visits. He used those litigator skills to ask the right questions, to follow up when the doctors were wishy-washy, and was another set of ears to hear and process. He could also make much more sense of the statistics on the fly. I do most of my onc appts. solo, but whenever anything big arise, he comes along.</p>
<p>I tend to write questions in advance, but he would go unscripted and really got to the crux of the matter.</p>
<p>Let those terrific kids step up to the plate. They will feel better knowing there are things they can do to help, even if it’s vacuuming, running the dishwasher, folding laundry, etc. These are good life skills anyway (their future spouses will hug you in gratitude!), and it reinforces that families come together when times get tough.</p>
<p>I have not been through this exact medical experience, but I have been through others. If it makes sense to you, OP, to keep a little journal for your kids at this time, I mean a line or two a day or even a week, to give them your thoughts and love, that’s my thought, but if it doesn’t work for you right now that’s ok too. My love, thoughts and prayers.</p>
<p>I have no words of wisdom for you, OP, because I have never been in your shoes. Please accept my prayers and wishes of speedy recovery. All the best to you and your family during this difficult journey.</p>
<p>I have a friend who went through this with her husband and one of those no-survivor quick cancers. Her children were sophomores, college and high school when he was diagnosed and seniors, when he passed away. Clearly, since he lived 24 months from the first symptoms and diagnosis (stage 4), there have been major medical advances that the ‘take no prisoners’ cancer info had not quite caught up with.</p>
<p>If I can help with any details about how my friend coped, feel free to PM me.</p>
<p>I wish you a speedy and easy recovery from surgery. I would second all who mentioned a notebook, but I’d add a whole drawer or space in your house for records, articles, contact information, pharmacy instructions – everything you will collect. Having it in one space is convenient. Being able to close the drawer and the door on it when you need to is just as important.</p>
<p>Mostly I’m just adding to the chorus of good thoughts being sent in your direction. </p>
<p>I also wanted to tell you how great it is that you are being so open, honest and direct with your children. As a teen I dealt with both of my parents having cancer; my father died of lung cancer (it was the 70’s…back then no good treatment available) and less than a year after he died, my mother was diagnosed with breast cancer. my parents felt it important to “protect” us and shared almost nothing with us, especially in regard to my dad. That was the hugest mistake that they could have made…all that did was increase our anxieties. I realize that it was a different time and they came from a different generation, so I understand that they thought that they were doing the right thing. But I applaud the way you’re handling this; if I were in your shoes, I’d want to handle it the way that you are. </p>
<p>Hope all goes well for you tomorrow; you’ll be in my thoughts.</p>
<p>I would tell you to stop the laundry, but sometimes mundane chores help keep the normalcy. I would suggest talking time to write a letter To your sons and your husband. I did that before a major surgery and I really felt at peace when going under. I had said what I wanted to say and I felt complete peace knowing they would know how much I loved them if anything were to have happened. They never read them as I tucked them in our important papers file, because they were for worse case scenario only. But I would do it again in a heartbeat if faced with the same thing. The important thing is that they brought me peace of mind which in my opinion helped me get through the surgery.</p>
<p>With that said…I will be thinking of you tomorrow and wish you comfort and love during your journey.</p>
<p>Lots of good advice. One thing that I have not seen mentioned is that the treatment will undoubtedly be long and arduous. You have one child at home and one at college. I would suggest that you keep in mind the differences in their experiences so that neither feels burdened (one will be there to “do” things, the other won’t as much). You don’t want the one at home to feel unduly burdened and the one away to feel left out.</p>
<p>My mother died of CLL in 1995. ONE WEEK later there was the announcement of clinical trials for a CLL drug. My FIL died of melanoma. Two months later…my oncology group announced a trial that has proven quite successful. I finished chemo four years ago (breast cancer). One of my dearest friend’s mom was one of the first women to get chemo in the United States. She led the path so that so many of us can survive today.</p>
<p>Hugs. Do not give up. Have your surgery, and then see what is available. My mother always said, “If you live long…you’ll live longer.”</p>
<p>Trust me, I am no Pollyanna. I have my yearly mammogram this week. I am on xanax as we speak because I am such a wreck. BUT, do not give up. Do not go to the dark places. Kids have strange ways of coping. One of my kids was truly ashamed that I was sick. Another became angry. Another, totally against character, became assertive and dictatorial. </p>
<p>You fight. Never give up. PM me if you want.</p>
<p>Hugs. Good thoughts for you and your surgeon. I was diagnosed with an early stage but an aggressive cell type when D1 was a HS freshman and D2 was in 7th grade. We were honest and just told them what we knew, as we knew it. And we all tried to live life to the fullest. </p>
<p>I prayed that I would get enough time to see my youngest graduate from high school. When that happened, I got a little freaked out that my time might now be up, but so far so good. </p>
<p>Love your family, love life, and live. There will be days you will be sick, and in pain. There will be days you are scared. There will be days you cry in secret and other days you cry and don’t care who sees you. There will be days you are frustrated. There will be days you will be tired. There will be days you don’t want to get up and get dressed. But every day that you wake up to see the sun rise, that is another day. You will find strength in places and people you did not expect. And your kids and your husband will be there for you. And it is also OK to let them know you are scared. Because they are as well, and it may help them to verbalize rather than to just keep it all inside.</p>
<p>Sunriseeast -
I am holding you in my thoughts.</p>
<p>Your sons may want to contact a chapter of the national group, Students of Ailing Mothers and Fathers. It is designed to support students whose parents are facing serious illness.</p>
<p>Sunriseeast, I have nothing to add but my best wishes for tomorrow and the days and weeks to follow. I am happy to hear that you have analyzed your own situation and feel optimistic.</p>
<p>Sunriseeast, you and your family will certainly be in my thoughts and prayers. I’ll be thinking of you as you go through your surgery tomorrow. Hugs to you!</p>
<p>Sunriseeast, I’ll be thinking of you also. My very best to you and your family. And from my own experiences in talking to my son about the realities when I was very seriously ill, once when he was 14 and again last year when he was 19, he always appreciated honesty, no matter how upsetting it was to him.</p>