purplelady47

I am so sorry to hear this. With a gentle hug, Pam in FL

Hey there Linda ~ I am so glad you posted. Your words gave me great insight to many of the things my daughter might have to deal with. I am so very grateful. May I give you a little insight into my thoughts as a patient? I've always been very in control of my life and have been able to decisions after reviewing all the necessary data. Then came cancer and I am finding that I have a real difficult time making any decisions. I say I want to make a decision, I do a whole bunch of thinking and then I decide not to make a decision, which, in my pretzel logic thinking process, is making a decision. Go figure! I know that I am frustrating not only myself, but also many of my friends, who are sadly mourning the "old Pam". My inability to make a decision has not affected my daughter yet, thankfully. My daughter and her husband are talking about moving here to help me. Part of me thinks "No, don't move, live your own life. I don't need help." And another part of me is saying "YES!!! Get here NOW!! I need the comfort of your presence in my life." From my perspective as a Mom, I don't want to be a burden to her. Yet, I want the comfort of her presence. Too bad I can't have it both ways, you know? I haven't been through half the stuff your Mom has dealt with since her diagnosis and there are days when I feel pretty overwhelmed with all this cancer stuff. I've been able to deal with my treatments and doctors without the level of support and advocacy that your mother has needed. Between her illness and just the whole "I have cancer" thing, I am not surprised she is getting nasty. It's just one of the ramifications of the disease and I've been lucky that I haven't been nasty to those I love yet. I dealt with a very nasty and very ill Dad for many years. Your hair would stand on end if I told you some of the nasty things he said and did to me as his illness progressed. He hated his life and blamed me for everything that was wrong, starting with the death of my Mom. His nastiness really hurt me and it took me a long time to realize that his behavior wasn't my much loved Dad, it was his illness. I had to learn to put aside the ugly stuff and reach into my memory for the Dad that I knew and loved. I know you are stressed, frustrated, angry and probably pretty hurt by your Mom's words and actions. I felt that way with my Dad and then on top of that, I had great guilt because I of my feelings!! Yeesshhh!! It was a nightmare of emotions!! It's hard not to take this all personally when you are doing your absolute best to make your Mom's life as comfortable as possible and make beautiful memories together. I don't have any advice for you other than if you find a magic wand, please feel free to use it immediately. My Mom and I used to work on lots of projects together. We worked well and hard as a team. She once told me that the first and most difficult job we ever did together was the job of her laboring to give birth to me. My Mom was wrong - the most difficult job we ever did together was the final task we performed as a team - the job of giving some meaning and peace to the last months of her life. You are doing a wonderful job of taking care of your Mom under difficult and stressful conditions - emotionally and physically. Sending you strength, courage and serenity, Pam in FL

I've always been more rational as my first line of action. And then compassionate kicks in and I go into hyper-drive. A little balance would be a good thing for me!! Pam in FL

Thin crust - I think that is a holdover from my years in Chicago. Lots and lots of cheese and sausage!! :::le sigh::: Now I am hungry AGAIN!!! Pam in FL

:::::doing the happy dance for Sue & Missy::::: Pam in FL

Hello Lillian ~ Your post brought back some memories for me of the days right after my diagnosis. Gosh, that was a scary time and I am terribly sorry you are experiencing this too. One of the most difficult parts about being a lung cancer survivor is the waiting times. Thank goodness you posted - if you have to deal with lung cancer, this is the best place to be. The stats are so scary so I stopped reading them. I've learned that there is so much living to do while dealing with lung cancer. It's hard to be positive when your life has so dramatically changed, but after a while, it won't be so scary and confusing. Lean on the group - we are here for you!! With a gentle hug, Pam in FL

Hello there Donna!! Welcome!! Sorry you had to find us, but we are glad to be your fellow travelers on this journey!! Yeah, the chemo is no picnic, that's for sure, but it is doable. Everybody has different experiences and hopefully you will be able to continue to deal with the side effects!!! I will keep you in my thoughts as your chemo continues. You have received some great ideas regarding the PET scan and something to relax you prior to the scan along with a CD with some favorite tunes would be a big help!! Thanks for joining us and hope we can be of some assistance to you!! With a smile, Pam in FL

Oh Carleen & Keith ~ You are in my prayers. Gently hugging you both~ Pam in FL

The withdrawal symptoms were awful!!!!! I don't know how I survived!!! But I managed to get many domestic goddess chores done and I made some jewelry in between checking if the board was back up. So glad to "see" everyone again. Major thanks to Katie & Rick!! Pam in FL

Hi Lisa ~ Gee, you are having a hard time getting a diagnosis! Thank goodness you are going to Moffit so the experts can sort this all out for you. I know the wait and the confusion is difficult and I bet it is just weighing on your mind. You can call scheduling at Moffit and ask them to call you if they have a cancellation. That might help! If that's not possible, know that we are all here for you!! Pam in FL

Oh I love purple - in all its' shades and hues. I wear it often - daily, in fact. My bedroom is painted two different shades of purple, with olive green trim. My couch is purple too - a deep eggplant purple. I even found a purple potato peeler (try saying that quickly three times!) recently at Target. Pam in FL

I am so very sorry to hear this. Pam in FL

Thanks everybody - your kind words made me feel "normal" and helped me to decide that I am not going to worry myself about living up to everyone else's expectations of what they think I should be doing at this time of my life. After reading your replies and thinking hard about all this, I have come to the realization that this is all part of the "new normal" of my life. I've accepted that life is different due to my diagnosis. Perhaps now is the time that those who love me accept and celebrate my "new normal" rather than mourn the change. I feel much better, thanks to all of you. With a hug, Pam in FL

If I still had hair, that joke could be part of the story of my life. Pam in FL

Carbs are my friend. Any my most very favorite Italian friend is Fettucini Alfredo. Now I am hungry and tonight is Mexican night at our house. But maybe tomorrow night will be Italian! Pam in FL

and I feel like I am in a swamp of molasses. Here's the scoop - I am 47 years old, a single Mom of a 10 year old boy. I quit working after my first treatment - I knew there was no way I could keep up the with the mental demands of my job and take care of myself and my son. I am okay financially - SS disability will start in August and I can make it until then. My married daughter and her husband are planning on moving to FL in September so they can help me out. I knew that I wouldn't be able to stay in my home just with the the disability. So basically, life is pretty good. My only "post chemo" issue is that I have the attention span of a flea. Really - I am not exaggerating. I have absolutely no focus and flit from project to project. My days are full of absolutely nothing much. I am not bored, nor am I apathetic, nor am I just existing. I am just being. Of course, all of my thoughtful friends have ideas/suggestions on what I need/should/could be doing. Some have suggested volunteer work, another suggested part-time work....everybody has some idea about what they would do if they were in my shoes. Well they are not in my shoes and quite honestly, until I put this pair of shoes on, I had all kinds of ideas of what I would be doing when my treatment was over. Boy, was I wrong!! I am enjoying this period of "just being" and doing what I need and want to do. It's a very simple and peaceful time of my life. I have activities on my calendar that I am greatly anticipating and I am enjoying the times that I spend with my family and friends. Whenever somebody pushes me too hard suggesting that I should be doing "something", I've stopped listing my accomplishments and say "Thanks for your suggestions, but I really am quite alright!" I know that I am frustrating a few of my friends - before my diagnosis I always juggled multiple things and was going at full speed 24/7. Some of them have stated "I wish your life was the way it used to be". So is this common??? Is this inability to focus part of chemo brain or just the stress of coming off a very difficult part of my life? Is this depression? I don't feel that I am depressed - I took a couple of those online tests and they didn't indicate depression. Or is this just the "new normal"??? How did you feel during the period of time when your treatment ended? I am still a bit tired each day. I am exercising, gardening, swimming and taking care of my son and home. I feel good, physically and mentally too. So maybe I am not stuck?? Maybe I am exactly where i need to be at this point in my life. Pam in FL

I always wanted to learn how to belly dance and I finally took lessons a couple of years ago. I am not great at it, but I will be an interesting addition to any LC get-togethers that I might attend, don't you think????? I've always wanted to make glass beads and I have all the supplies waiting for me in garage along with a couple of books and instructional videos too. Once my brain is a bit clearer and I can focus on stuff a bit better I am going to watch the videos again and begin practicing. If I can't get it right, I may take a couple of classes so I can work on this hobby. Pam in FL

Hello there Shirlie ~ Sorry you had to find us, but boy oh boy, have you come to the right place for information and support. The folks here are awesome and I don't know what I would have done if I had not found this group. I've just finished up with the last of 6 Carbo/Taxol treatments at the end of April. My first treatment took almost all day - I got there at 8 and wasn't done until after 3 pm. Subsequent treatments were about an hour less. First you get your IV pre-meds to help prevent side effects and then you might get some IV Benadryl (or something similiar). Once they started infusing the Benadryl, I fell asleep for a couple of hours - it made me very sleepy. Then came the Taxol infusion, which took about 3 hours and then the Carbo, which took only an hour. I was able to drive myself to and from chemo each time, but my doctor's office is only about 10 minutes away. I recommend having somebody take you at least the first time. The treatment does affect everybody differently. My hair didn't start coming out until around day 17 after the first treatment. But when it did start falling out, it came out swifty and in clumps. That's when I took the shaver to my head and got rid of that mess! I felt much better once it was all gone - anticipating the hair loss was much worse for me. I highly recommend getting your wig before your hair starts to fall out. That way you can match your color/style easily. Of course, I didn't follow my own advice and waited to get my wig until the last possible moment. Then I decided to get a couple of them in different lengths, styles and colors, just for the fun of it. I also have lots of hats and scarves to wear - the wigs can be hot! If you are in the US, your local American Cancer Society probably wigs for free. That's where I got my first one. Or your insurance may cover the purchase of a wig if your Doctor writes you a prescription for a "cranial prosthesis". Hope this gives you a bit of insight into your first day of chemo. Keep us updated on your treatment. I will keep my fingers crossed so that it all goes well for you! Pam in FL

Val ~ I hear you too! If I had a nickel for each time somebody told me "Oh Pam, you have such a positive attitude and you are such a fighter! I know you will beat this!" I always wonder what folks will say if my cancer can't be brought under control...will they say "Pam must have stopped fighting and cancer won?" In my not so humble opinion ( ), there is no clear - cut winner or loser in our individual battles against cancer. Every person whose life is affected by a diagnosis of cancer does their absolute best to deal with the disease, based on what they want, need and can do. Just getting up each morning and doing what you can/need/want to do is fighting the disease, be it if you are the patient or loved one. Sometimes that is all you can do. And really, that is enough. My mom had SCLC w/brain mets in 1995. She decided to have surgery for the mets and the surgery gave her a couple more good months. At that time, I was frustrated with her because I wanted her to fight harder. But I knew she had to make her own decisions and I abided by them. When she died, I was angry with her for quite some time because she left me with a huge mess to deal with. I felt she gave up too easily - it was simpler to leave it all for Pam to deal with. Now, 11 years later, I do understand that she fought her battle with cancer, in her own way, based on what she needed and wanted to do. I don't think that her decision to refuse more treatment showed her inability or unwillingness to be a fighter. It showed her strength, tenacity and courage to do it her way. We all are warriors - whether you are the patient or a loved one. It's not the length of the battle, it is just the fact that we live. I have a plaque in my kitchen that says "Everyday people can be heros every day". I believe my Mom was a hero, both in her life and at the end of her life. I am willing to bet that your Mom was one too. Hugging you gently, Pam in FL

Oh Carleen - I am so glad you took a moment to update us all! I know how awful it is to see your loved one in such pain. I am glad to hear that Keith seems to be doing better now. Your schedule sounds brutal and I remember my days caring for my husband were definitely not for the weak! I will continue to send positive thoughts your way for continued strength and ever decreasing pain for Keith. You are such an awesome woman. With admiration and a gentle hug, Pam in FL

If I need to have chemo again, I am going to INSIST on a port. I didn't get one originally due to some insurance problems and some timing issues - it was the holiday season and I didn't want to wait to start chemo. When I was 1/2 way through chemo, finding a good vein became difficult and multiple jabs were needed for blood draws and IV insertions. I am not going to deal with that again! Pam in FL (who felt like a pin cushion for the last three months!)

We finally had some rain down here in FL yesterday. I think we went almost 2 months without any considerable rain and we certainly needed it! Today is nice - might hit 80. I even shut off the air conditioning and opened up all the windows. For all those who still are dealing with lots of rain, I will lend you my umbrellas and raincoat, but I will need to have them back before hurricane season starts! Pam in FL

I am so sad to hear this news. With sincerest condolences, Pam in FL

We were at a Cub Scout Pack meeting. A little girl (still in diapers and couldn't talk yet) was standing on a chair all by herself while everybody at the table was on the stage, getting awards. I got a bit concerned when I saw her feet slipping on the chair. So I got up and went over to her and sat down next to her. She wanted her Mommy, but Mommy was on the stage with her older brother, who was receiving an award. I picked up the little girl (Thank goodness she didn't start screaming!) and carried her around so she wasn't alone on the slippery chair. Mom came off the stage and saw me holding her daughter and I explained that I was scared she was going to fall. I went back to my seat and felt pretty good - I would have hated if that little girl would have fallen and hurt herself. Pam in FL

For a minute there, I thought you had posted one of my son's school papers when he was still having difficulty with spelling and sight reading!! Pam in FL