purplelady47

Hello everyone ~ Being a cancer survivor is truly a full time job!! Yesterday I was up before the birdies to get to the surgery center for my 6 am appointment for my port placement. Thankfully, everything ran on schedule and I was back home, laying on my couch by 11 am. The port site is sore when I touch it or lift my arm up above my chest, but the pain medication is taking care of this quite nicely. Today I met with the chemo nurse and my oncologist to decide what to do next. I decided to join the Taxotere with talabostat clinical trial http://www.cancer.gov/search/ViewClinic ... id=2520693 My only question regarding the clinical trial was if I could get the Neulasta injections the day after my chemo infusion or if I had to wait until my counts dropped. The nurse spoke with the clinical trial folks and she was told that all injections could be given at the investigator's discretion. So I can get the injections before they are needed (as prescribed by my oncologist). It's really important that I do everything that is possible to prevent infections - I know that my young son is exposed to so many potential infections in school. Once that was decided, then I had to get another CT scan of my chest and abdomen along with some bloodwork. I will begin chemo on Tuesday and then every three weeks after that. I know that having a good attitude helps but I must admit that it's been more difficult this second time around. I look at what so many folks have been through and I think "Buck up Pam - put on your big girl panties and deal with it!". But it is hard and I just haven't found the right attitude yet. I am tired of all this medical crap, I am tired of needing help, I am tired of being a "good patient" and I am tired of being brave. WWWWAAAHHHHHHH!!!! I suppose I should offer up some cheese with that whine. Needless to say, I asked for a prescription for an anti-depressant today. I am hoping that helps to adjust my attitude. Thank you to everyone for sharing your thoughts and experiences with me so I could make an informed decision. Gratefully, Pam in FL

I am so glad for all this info - I get my port next Tuesday and need to know what to expect. Hope you feel better soon Nancy!!! And thanks to everyone else for your comments~ Pam in FL

Sending you my best Lori ~ Sometimes it is just too much to take it a day at a time because we are so overwhelmed by all the crap that life is throwing at us. Then it is time to resort to Plan B, which is to just take it hour by hour or minute by minute. Major hugs, Pam in FL

Thank you to everyone for sharing your thoughts and kind words. After listening to your wise words and reading everything I could find online, I am planning on going with the Taxotere. Once I talk with the chemo nurse, I will decide if I will go in the clinical trial or not. That decision is really based on my ability to get the Neupogen and Procrit injections during the trial. While I was on my first cycle of treatment, I was able to get these injections before I experienced any of the problems associated with low blood counts. If the trial protocol states that I must wait until I experience symptoms or until my blood counts plummet, then I will not join the study. I can't take that added risk of problems while having to care for my son by myself. I will get my port put in on Tuesday and I can't wait for that. Originally I was told that I wouldn't know what time the procedure was scheduled until 3:30 the day before. This posed a huge problem for me because I need to make arrangements for my son. Thankfully, the scheduling nurse spoke to her supervisor and I am scheduled to have the procedure at 7:30 am. There are kind and caring folks in the medical field and I am so grateful that she went the "extra mile" to make my life a bit easier. Once again, thank you to everyone! Pam in FL

When I woke up this morning at 6:30, it was already 82 here. Right now it is 93 and the expected high this afternoon is 98. Egads!!!! But it is supposed to rain around 4 pm today, so that might cool it off a bit....maybe to around 95 with 100% humidity. I am not complaining though - there doesn't seem to be any tropical storms brewing and that is something to be very grateful for!! Pam in FL (just north of Tampa on the Gulf of Mexico)

That's right Lori ~ Every single one of your actions is a sacrament. Sending you oodles of strength, courage and lots of hugs, Pam in FL

Lori ~ First of all, don't even be partially ashamed that you decided to tie one on (that statement was typed in between sips of my iced coffee flavored with Cask & Cream ). Although I don't use liquor as a coping mechanism, sometimes it is exactly what the doctor needs to prescribe. Secondly, please know that I am so sorry to hear this news. I had hoped that the neurosurgeon would tell you that the bumps were just some strange side effect of treatment. Please know that I am sending you lots of strength, courage and hugs as you deal with the challenges that lie ahead. I remember the day my Mother signed herself into Hospice. When she was just diagnosed and decided not to treat her cancer, I was very angry with her. But I had to let her make her decisions about her life. I don't know if not telling your Mom is a good thing - no matter what she is saying about returning to work or no matter how her cheerful her attitude is, she may be presenting the "right" attitude, partly in fear and maybe partly to help you. She might want/need this time under Hospice's care to have the opportunity to impart her wisdom and love to her family and loved ones. Lastly, I know that we tend to look at Hospice as giving up hope. I am trying my best to look at Hospice care as not giving up hope, but rather changing the gears of hope. I know that doesn't make alot of sense (blame the Cask & Cream ) - during treatment we are hoping for NED and/or stable disease and under the care of Hospice, we are hoping for comfort and peace, not only for the patient, but also for the family and the loved ones too. So we are not giving up hope, just changing what we are hoping for. Nobody knows your Mom like you do and I know that whatever decision you make will be made with love. It is a tremendous responsibility to put on your shoulders but I know that you are a strong and brave woman as well as a loving and wonderful daughter. With love, Pam in FL

Hello everyone ~ I had my 3 month post treatment CT and the scan shows some slight progression of the tumors. I saw my oncologist today and he is recommending further treatment. I have an appointment set up for a port on Monday (thank goodness!!! ) and will meet with him on 08/01 to pick a treatment. He's offering Alimta as a single agent or a clinical trial with Taxotere where a patient is randomized into either Taxotere alone or with Talabostat, which is an oral chemotherapy. So my decision is basically Alimta or Taxotere. If you are willing to share your experiences on either of these chemotherapies, I would really be grateful. Thanks so much, Pam in FL

My all time favorite kitchen sign is....... I kiss better than I cook. Pam in FL

Ah, this is wonderful news!!!! :::doing the happy dance::: Pam in FL

Oh Lori ~ What a roller coaster you and your family has been riding!!! I am so glad Mom is home and that SF has finally gotten a ticket to the clue bus! I think we will have steak here tonight to celebrate your Mom's homecoming. Pam in FL

OH MY GOODNESS!!!! I missed this great news!!! :::doing the happy dance:::: Way to go Cindi!!! Pam in FL

FRIENDS & FAMILY

Bless you Lori ~ what a wonderful person you are. The happiness and joy in your post made me smile. Thank you for sharing your joy with me. Pam in FL

I've never posted in this part of the group because I didn't feel like a survivor. But recently I realized that I am a survivor - it's now seven months since I was diagnosed and I've gone from thinking "I am going to die of lung cancer" to "I am going to live with lung cancer". I have to admit, that without this board, I would still be thinking my initial thoughts. I have the typical fears that everyone has expressed here - I worry about the unknown, which I never worried about before my diagnosis. I worry about my children and how they are coping with my illness and how they would cope if things don't go well. I worry about how our lives have changed and how they might change. Of course, I have major concerns about progression - who doesn't? I often wonder how I would handle this, especially after seeing the strength and courage of so many of the members of our group. Right now, at the 7 month mark, I am dealing with my grief regarding the changes in my life - I am in "mourning" for the loss of my life as it was and I feel I am in the process of living and celebrating the "new normal" life. A few weeks ago I looked up the stages of grief and reviewed them - they are denial, anger, bargaining, depression and acceptance. I couldn't pinpoint where I was at and I did some further reading. I found a good definition of grief "the total response to the process of change" and the stages of this definition of grief are: T - to accept the reality of the loss E - experience the pain of the loss A - adjust to the new environment of the loss R - reinvest in the new reality I feel that I still working on accepting the reality of the loss of my old life and I am adjusting to the new life. There are some days that I am a bucket full of angry because of my lung cancer. This surprises me, because I've not been an angry person prior to my diagnosis. In fact, I was quite the opposite. So there are days when the anger flares and I cycle into it. These days are quite debilitating and I really hate them. Although I hate them, I know that I must deal with this emotion - it has taken me many years to realize that I must feel my feelings and not ignore them. If I ignore them, I know they will come back and bite me in the butt later on down the road. I am trying to look at my anger as a very healthy sign while reinvesting in my new reality. I am learning to like my new reality - this too is a process that takes some time. I've stopped comparing the old normal to the new normal and I've found some of the inner peace in my life that was so lacking since the day of my diagnosis. I've never been one for making long range plans. Since my diagnosis, I have had difficulties making short range plans. At first, my short range plans were in three week increments - they revolved around my chemo schedule. Now I am in the 3 month short range planning stage, which is my follow-up schedule. This is working better for me than my 3 week short range planning schedule. I see my oncologist in 2 weeks and I am going to ask for a prescription to help with the emotional issues I have been experiencing. I don't want to get bogged down in all this grief and I know that I need some help. I am not the same person I was December 8th (the day before my diagnosis). Even with all the emotional stuff, I still like the "new" Pam. She's learned alot since that day and is slowly becoming the woman she longs to be. I have lots of living left to do. Cancer didn't change that. Pam in FL

Oh Linda ~ I am so very sorry. Major hugs, Pam in FL

Cindy~ I am so sorry for you. Consider yourself hugged! Pam in FL

Peace, strength, courage and oh-so-much love to both of you. With a gentle hug, Pam in FL

My son & I camp regularly - about once a month. So I am with Cindi, at the spa...... Maybe she can get us a group rate??? Pam in FL

1. arm 2. leg 3. lung(s) 4. heart 5. pinkie toes 6. nose 7. knee 8. 9. 10. 11. 12. 13

Hey there!! I also did Carbo/Taxol and experienced some neuropathy in my fingers and toes. I know it has decreased (It's been 2 months since my last chemo) because I stepped on a wasp and got stung 2 weeks ago and I sure could feel THAT!! And I recently burned my finger when removing a pan from the oven - minor burn, but I felt that too. I still have some neuropathy in my index finger and thumbs in both my hands, but I am hoping that will decrease. I make glass beads and it would be nice to be able to feel what I am holding, especially since I am so prone to injury because I am not very graceful!!! But if the sensation doesn't return, I will figure out how to compensate for the problem. Hopefully, it is just a matter of time. Pam in FL

Invisible for sure. Flying would surely mess with my vertigo!! Pam in FL

I am sending prayers and positive thoughts your way for both you and your Mom. Pam in FL

I have a 10 year old son and I knew that the physical changes I would go through would really bother him. I had long, blonde (out of a bottle) hair at the time of my diagnosis. When I found out that I was going to lose my hair, I cut it short (chin length) and went back to my real color. About 10 days after my treatment I had my hair cut real short, so that I wasn't dealing with tons of hair when it started falling out. I hated the "hair falling out" process, so I buzzed my hair off by myself. I didn't want anybody to do it for me in case I got upset. It is a startling change and quite honestly, I never got accustomed to it. I wore lots of head coverings and I got a couple of wigs of varying styles and lengths. I now have peach fuzz all over and I am not wearing anything on my head around the house anymore. I still cover my head when I go out - I figure when I can't see my scalp anymore is when I will go out without my hat in place. I printed up the Kemo Shark book http://www.kidscope.org/kemo.htm to help my son understand what I was going through. On the days that I didn't feel great, he would say "Oh the Kemo Sharks are working hard". Hope this helps for you too! Pam in FL

Oh Carleen & Keith ~ I wish I had some words that could comfort you... I wish I had the magic wand to make this all go away... Pam in FL