purplelady47

Oh how awesome!!! Congratulations!!! Pam in FL

Sherri - So sorry to hear this news. I will keep you and your family in my thoughts. With a gentle hug, Pam in FL

Hey there Tom ~ Glad to hear that your treatment has started. I just finished 6 Carbo/Taxol with minimal side effects - some peripheral neuropathy, some queasiness post chemo, some sense of taste changes post chemo. For me, the fatigue and joint/muscle pain were the most difficult part. I lost my hair right around day 17 after the first treatment. It was sudden and swift. I decided to shave it all off because I was tired of dealing with it and because my scalp was so sensitive and tender when it started to come out. It was a great relief for me when I shaved my hair - I finally was in control of something and it made me feel a bit better. Sending you positive thoughts, Pam in FL

Kate Hudson. When I had a whole bunch of dental work done, the dentist said he gave me Kate Hudson's smile. I really wanted Julia Robert's but he said that my face was too small for her smile and I would end up looking like this: Pam in FL

Thank you for sharing all your good news with us!! And welcome to your new grandchild! Babies have a way of reminding us what really is important in the world. Pam in FL

Thanks everyone!! I've contacted Moffit and will hear from them within two days regarding an appointment. I have all my medical records, films and biopsy slides, so I am ready. I really needed your validation of my gut feeling to seek a second opinion. Knowledge is power and I don't want to "Wait and see". Gratefully, Pam in FL

I only have a kitchen because it came with the house. Seriously though, I cook at least 5 nights a week. I try to do most of my cooking out on the grill and I've become quite accomplished! My son & I like to keep things pretty simple, so we eat alot of "kid food" here. He's not one for haute cuisine. Pam in FL

Hello everyone! I finished chemo two weeks ago - 6 Carbo/Taxol treatments. The last one was a bit difficult but all in all, chemo was doable. Needless to say, I am glad that is done for now. I had my CT scan and the results show approximately 50% shrinkage in the two tumors in my right lung with the adrenal tumor remaining stable. I am very pleased with the results. Talked to my doctor today and he calls this "partial remission". I have an appointment for another CT scan in 7 weeks and will see him in 8 weeks. I am basically at the "wait and see" point. I am not happy with this - I have always been somebody who is proactive, rather than reactive, so this "wait and see" thing is going to make me nuts. I am thinking that this is time for a second opinion. I want to gather up my scans, biopsy slides and medical records and go to the Moffit Cancer Center in Tampa for a second opinion. My thought is that we knocked the tumors back quite a bit, why stop now? I understand the idea of palliative treatment for my Stage IV disease. However, since the chemo treatment was to improve quality/quantity of life, why not try to continue to decrease the size of the tumors? I'd appreciate your opinion about the 2 month "wait and see" period and the idea of the second opinion. Thanks so much, Pam in FL (who really is very grateful for the SHRINKAGE!!!)

Meeeeee threeeee!! I have been keeping both of them in my prayers and thoughts. Pam in FL

I believe that many of the items mentioned by nikkala can be covered by your Mom's insurance if her Doctor will write a separate prescription for each item. You might want to discuss this with the Doctor and even ask for a letter of medical necessity, based on your previous issues with the insurance company. I took care of my father for ten years after my mother died and I spent a fortune of my own money over the years. I don't regret a penny of the money I spent. His funds (SS & a small pension) covered his bills, but not anything else. I kept a separate checking account for him, with me as the second signer on the account. I highly suggest that you do this also and make sure your Mom's income (whatever that might be) be directly deposited to that joint account. I made sure my Dad had money in his pocket so that he had a level of financial independence. I felt that was very important to him. Of course, I kept every receipt for his expenses just in case my brother gave me trouble about money. Thankfully he never did. Also, I know that there are tax issues related to being a caregiver. Please check with your tax person so you can keep good records for tax time. That's all I can think of off the top of my chemo-brain, caffeine deprived head. You are doing such a great job and are a wonderful daughter!! With a smile, Pam in FL

Oh Don & Lucy - The first day of this chemo regime is really brutal and I feel for both of you. I would come home from chemo and just be totally wiped out. I bet one of the pre-meds is Benadryl and that makes some folks really sleepy. I would be in a chemo room with 15 other folks and I would sleep for at least 3 hours each time. The nurses would change my IV and I would never even wake up!! The good thing about this regime is that nausea usually isn't a problem. The worse part, for me, was the immense fatigue, the intense muscle & joint pain and the issues with taste from day 2 through day 5 post chemo. Drinking tons of water really does help with this one. I didn't drink enough water after one of my chemos and noticed the difference. I will keep both of you in my thoughts and prayers. With a gentle hug to both of you, Pam in FL

I am so sorry to hear that your Mom died Jodi. But I am glad that you were able to be there for her. You are a great daughter and caregiver. Consider yourself gently hugged by me. Pam in FL

My 10 year old son & I did a week at Disney last year and had a great time. Use the Fast Pass option as much as you can so you can cut down on the wait time. It's really easy to use - scan your ticket and get a time to come back for the ride. You can only have one Fast Pass at a time, so it is good to plan your day! Epcot was my favorite - the fireworks there are so awesome. Make sure you go on Soaring and Test Track - they are great! The flower show is going on there now and that is always gorgeous! We love the Viking ride in Norway! If you do MGM, you MUST see the Stunt Show "Lights, Motors, Action!" and definitely get a Fast Pass for that one! It was awesome! The Star Wars Ride, the Great Movie Ride and the Indiana Jones show were my personal favorites. The Magic Kingdom was the roller coaster rides for us - we went on each one three times. It's a Small World has been refurbished and looks all brand new. The Haunted Mansion is always ghoulishly fun too! The parade and the Cinderella stage show in front of the castle is cute. Many of the classic attractions are still there. I really enjoy this park. I like Universal also, but I haven't been there recently. Weather here in FL is warm - pack your sunscreen and make sure you drink plenty of water during your stay! Our rainy season has not begun yet, so you shouldn't be troubled by afternoon showers. Night time temps are in the low to mid 60's and daytime temp is between 82-87 so it is quite lovely without the high humidity! Enjoy your trip - although the plane ride may be the worse part of your visit, it will be the shortest part also!! Pam in FL

I spoke to my Doctor and he said that I should avoid swimming in public pools, lakes, oceans etc, but it was fine to go in my own pool. Thank goodness! I was under the impression that I was going to have 8 treatments, due to some paperwork that was sent in to a drug company prior to beginning chemo. However, after speaking with my doctor today, he said that I will only get 6 treatments of Carbo/Taxol - which means that next week's chemo is the last one. :::happy dance::: After the last treatment I will get another CT scan and we will see what's going on and then determine what is next. I am sure I will have more questions for everyone then! Pam in FL

Hello everyone! The weather is wonderful down here in FL and my pool temperature is slowly increasing. My son and his horde of buddies have been in the pool during spring break, but it still is a bit too chilly for me. (I am a wimp!) When I mentioned this to the nurse at my oncologist's office a couple of weeks ago, she said I shouldn't go in the pool while on chemo because of the potential for infection. Since the pool temperature made this a non-issue at the time, I didn't pursue it. I see my oncologist tomorrow to set up treatment #6 of 8 and I am guessing that the pool will be warm enough for me soon. I was wondering if anybody else was told "No swimming during chemo". I could understand if I was going in a lake, stream, ocean, gulf or even a public pool. But since this is my own pool and I test the water regularly and treat the water accordingly, I can't see why I can't go in my own pool. I am not planning on doing any major swimming - just floating around and playing with my son. I've given up roller skating/blading and bike riding per my Doctor's instructions, due to the higher risk of falling because of the chemo side effects. Going in the pool with my son and our friends has always been a big part of our summer. Am I being whiney about this? Should I just "put on my big girl panties" and deal with not going in the pool this summer? Pam in FL

I realized after my first treatment that I was not going to be able to work. In February I applied for Social Security online and although the application was very detailed and lengthy, it wasn't horrendously difficult if you have all your personal and medical information in some type of order. Within a few days I received a letter regarding a phone interview and after that phone interview I had a face-to-face appointment. It's important to have an appointment because otherwise you end up waiting forever at the Social Security office. When I had the appointment I brought in copies of all my medical records - the important scan, x-ray and biopsy reports along with the notes from my visits with my oncologist. I also had to bring in a certified copy of my birth certificate. I was approved for SSD within two weeks and my benefits will begin in August. In the meantime, I receive SSI also. I was told that SSD approved my application so quickly due to the stage of my cancer and because I had all the necessary medical records for them to review. I was really dreading the whole SSD application process and it wasn't that bad at all. As Cindi said, it doesn't cost anything to apply!! Good luck! Pam in FL

I was never a big eater and now I am find that I am forcing myself to eat meals regularly. Thankfully I have a child and he keeps me on schedule and nicely nags me when I don't eat enough. However, I am a big snacker and I tend to forage all during the day and then eat my big meal at dinner time. You do get cravings quite like being pregnant. My latest craving is Boars Head bologna - I will take seven or so pieces and roll them up without bread. I am also eating crackers with peanut butter with this. For some strange reason, it just tastes so very, very good. One morning for breakfast I had a baked potato with all the fixings because I JUST HAD TO HAVE ONE. Go figure. I have realized that when my body says I am hungry, I am hungry NOW, not in 15 or 20 minutes or however long it takes to put together some food. Therefore, I have become the Queen of Packaged and Prepared Foods and my microwave has been working overtime. Keep the food simple, quick/easy to prepare and in small portions. That might also help! Good luck! Pam in FL

Yes, it would be a good idea to add those activities, as well as her self care activities too. Hugs to you, Pam in FL

I have worked medical accounts receivable, claims and denials for over ten years, so I have some insight on this stuff. My suggestions are: 1. Send the letters certified, return receipt requested. 2. Rather than saying "We will look forward to hearing from you in the near future.", I would say "Since time is of the essence in order to ensure maximum response to rehab therapy, I look forward to hearing from a member of your staff as soon as possible. I am aware that this appeal must go through certain channels for approval. I am that requesting that this appeal be expedited to ensure the quality care that your insured deserves. I will contact you within 5 days of your receipt of the appeal to follow up on your response." 3. Maybe using the phrase "activities of daily living"...that's always a good one. Perhaps "The goal of further rehab therapy is to give Sandra the potential to return to many of her activities of daily living, which she enjoyed prior to her surgeries. Without this therapy, that goal is not possible." Hope this helps some!! Best of luck to you! Pam in FL

I am so sorry for the difficult times you and your mom are dealing with right now. I have been the caretaker and the patient, so I know how awful both experiences can be/are. Every time I get blood work, I receive a copy of the results. As your mom's POA, you can get a copy of all her medical records. You may be charged for them (I think it is $1.00 per page for the first 10 pages and then .25 a page after that, but I could be wrong). If you get these copies, you will have all the information you need to get a second opinion. I know life is not easy for you right now. You are being such a good caregiver and daughter. Keep up the good work!!! With a gentle hug, Pam in FL

Oh my! What a difficult time you are experiencing!! I can empathize - I am 47 years old, diagnosed 12/05 with Stage IV NSCLC and my son is 10 years old. I also did not have health insurance when diagnosed. My disability will start in August, but in the meantime I receive SSI. It's not much, but it is a great help. Here's the link for that - http://www.ssa.gov/notices/supplemental ... ty-income/ Once I was approved for disability, SSI was approved and I received it immediately. Also, the American Cancer Society will provide financial assistance for pain medications along with giving your wife a free wig. RandyW gave you a whole bunch of good links (Thanks Randy - the third link is AWESOME!!) and I would like to suggest that you speak to an oncology social worker. My oncologist does not provide this service, but I found one to help me via my local cancer center. You can find one in your area by going to this link: http://www.aosw.org/ and clicking on "Contact AOSW". When I contacted the AOSW, I received a phone call within 24 hours and was given local contact information. The social worker I spoke with was EXTREMELY helpful. My son hates my bald look too. His buddies think it is cool, but Mikey is not fond of it at all. I've learned that kids don't like to be different and having a bald mom most certainly is different. I am not sure how much my son comprehends about the whole cancer diagnosis, but he does understand the chemotherapy treatment. I used this "kemo shark" book to assist in explaining chemotherapy to him: www.kidscope.org/Kemoshark.doc This helped a great deal. Even without any health insurance upon diagnosis, I have not paid for any of my health care. I know I have been extremely fortunate in this aspect. Since your wife was hospitalized, the hospital should have social workers on staff that will assist you in applying for Medicaid through your state. The staff at your wife's oncologist's office are aware of the patient assistance programs offered by a majority of the drug companies. I suggest that you speak to her oncologist or the chemotherapy nurse there. At this time of your life, you do not need the additional stress of worrying about paying for medical care. I can only imagine the mental and emotional burdens that you are living with. Please know that you and your family are in my thoughts and prayers. This support group is ready and willing to be your partner as you deal with this stressful time. Everyone here, whether they are the caregiver or cancer survivor, is *L*I*V*I*N*G* with cancer. With a gentle hug, Pam in FL

:::doing the happy dance::: Awesome news!!! Pam in FL

My sincerest sympathy at this difficult time. Consider yourself gently hugged, Pam in FL

Eating when you really don't have an appetite is difficult. I am one of those "eat to live" people and I wish I could be a "live to eat" person. On top of that, I don't like to cook either and I am a terribly picky eater. So I have been forcing myself to eat because my weight was down to 103 the day I started chemo. Now it is up to 115 lbs and I am still trying to gain weight. I know that when somebody puts a plate full of food in front of me I feel overwhelmed and I think "I am never going to finish this". And then I don't. So I started giving myself smaller portions and have found that I go back for seconds on the foods that I really like. (There are never any mashed potatos left at my house!) Also, small amounts of food served many times during the day works better for me than huge meals. I find myself foraging during the course of the day and then eat my main meal at dinner time with my son. Simple foods that are easy to prepare are the best. Sometimes the job of doing major cooking is exhausting. Pudding in a cup, slices of lunch meat rolled up, some crackers with cream cheese - this are some of my favorite foraging foods. I also reward myself with a good Burger King lunch once a week. Before I started chemo, one of my friends nagged me about drinking Ensure/Boost. I resisted because my thought was that if I need to use those drinks, I was sick. (Okay, so I am not always rational!) But every night I make myself an ice cream shake with Boost (I think Boost tastes better than Ensure). I am going through a quart of ice cream a week, something I never did before my diagnosis! I also eat a slice of pound cake with my drink before bedtime. The whole food/eating thing is difficult with a patient that doesn't want to eat. It's the same dynamic that we experience when dealing with our kids who don't want to eat their dinner! Good luck to you and your family! It is so wonderful to see all of you working together to take such good care of your mom! Pam in FL

Good going Roger! I have my 5th treatment of the same chemo next week and I remember how scary the first one was. Drink lots & lots of water! Eat well and often! Rest when you need to! I have found that it helps me to keep a log of how I am feeling for the 7 days post chemo. That way I can remember how I felt each day from one treatment to another. It's handy to have when my Doctor asks me if I experienced any side effects. Also, if I have an new symptom after a treatment, I can review my notes from the previous treatments to see if I experienced it before. Sometimes I forget! Continued good luck to you! Pam in FL