tjrasMOM

So, with 26 needles going through Mom's hands and arms over the past 9 days, she is thinking it's time to get a port put in. What experiences have people had with ports? Good and bad. Thank you!

Well, Mom is still in the hospital and SO VERY anxious to come home. It's been 9 days. She didn't have a thoracentesis but she did have a broncoscopy this week. They drained a lot of the mucus from the infection. They've also been doing a percussion therapy 3 X a day. A little machine that taps on her back & chest. Feels like one of those hand held massagers. It's helping Mom cough up a lot of stuff & get it out. The nurses hadn't washed her hair since she's been there so today I brought shampoo & we washed her hair in the bathroom sink. She felt great after that. But the one thing that is so painful to watch is how many times they've stuck a needle in her arm or hands. We figured today that with blood work daily, changing the location of the IV's -- she's been poked about 26 times since she's been there. That's 26 different needles going through her veins. And her veins keep collapsing. Her hand was so raw today when they tried to give her more anti-biotics that she started crying and told the nurse to STOP!!! Then she demanded that they take the needle OUT of her hand. I'm telling you....her strength is back now that chemo is out of her system! She is PISSED and isn't hesitating to let the nurses know when they can't find a vein or are sloppy about sticking the needles in! LOL. Today after the nurse took her needle out she said, "You are going to have to find another way to get those anti-biotics in me because you are not touching my hands again!!!! These veins have to be good veins for chemo again and you guys are so rough with me!" So, the nurse had no choice but to put a call in to the oncologist on-call and find out what to do. But I swear, my mom's hands are so swollen. She said that when the anti-biotic went in today it burned throughout her hand and whenever it burns THAT bad, it means the needle has poked through the vein and is releasing the meds straight into her hands. I can't even imagine! When the nurse walked out my mom turned to me and said, "Well, it looks like I DO have some power over my own healthcare! HA ha." The doctors are talking about removing her left lung. The left lung is giving her the most problems. The infection, the inflamation, etc. They weren't sure if the tumor had an abscess around it or not. She's worried because it's such a major surgery, but we'll talk to the doctor more.

My mom is still in the hospital fighting off some infection. She had another broncoscopy yesterday and they drained a lot of fluid out. She's feeling better because the chemo has worn off AND she can breathe better today. So, the point to my post here is that it's my 20 year high school reunion tomorrow night. I was on the planning committee but once Mom was diagnosed, I lost all concern for the reunion. But now that it's here, I'm excited for my husband and I to have an evening together. (Of course HE is NOT thrilled at all....he's been trying to pay people to go with me....LOL...Just kidding! Although he really would love it if I hadn't made him go..) But we'll have fun....so will he. And it will be nice, refreshing, relaxing...you name it....just to recharge. Although, I am thinking that I'd like to stop by the hospital on the way so that Mom can see what I'm wearing. Such gals, aren't we? But she's been giving me suggestions all week on what I should wear & telling me where I'd find the best sales. =) Anyways, we all need to recharge. Even if only for a few hours.

Kaneohegirl, I'm so sorry you and your dad are up against another battle. My prayers are with you. Tova

UPDATE: No release date. Mom had a fever of 102 today. Plus her potassium levels aren't rising enough. They gave her 6 big potassium pills -- instead of the painful IV drip. Even did another CT scan and the dr thinks they might do another thoracentesis tomorrow. She needs her lung drained! But it's obvious the chemo is leaving her system...she has more energy and not much fatigue. She needed this break. I'm SO glad we went to the ER Friday! I can't even imagine the "what-ifs" if she was home all weekend and not given everything she's been given.

Thank you everyone! Today was better. This morning I was able to sneak in a real latte for Mom and it made her day. Actually, I didn't have to "sneak" because the nurse said it was fine. Her infection is clearing up and for the first time in days she slept through the night. Thanks to her nurse! I asked as I was leaving last night if they'd give her something strong for her cough & some benedryl to help her sleep. He ordered it as I was walking out & today she said she slept GREAT! WOW, what energy people get after a good night's rest! She felt better today & was very cheerful. They'll probably release her tomorrow. Wishing everyone a good & peaceful day.

Last night Mom calls & leaves a message that her fever was up to 103. Unfortunately I didn't hear the phone & didn't get her message until 9:30pm. So, I called the on-call dr. @ the concologists and was advised to go to the ER. By the time we got there her fever broke & was normal...she was sweating all over the place. Finally at midnight we were let in (from the waiting room) & got a bed. By 4:30am the doctor FINALLY comes in to see her!!! Alot of DUI's & major trauma cases coming in all night after us...which took priority. We were annoyed - but tried to stay patient. I sat on a doctor's stool leaning against the wall from 12am - 5am. By 5am she was admitted & moved up to a regular room. Today after blood work they found that her potassium was dangerously low. They said if she didn't get it by IV immediately she could go into cardiac arrest. Poor Mom...she has been poked so much and her skin is so thin now. They did this while I had gone home for a couple of hours. But when she told me about it she got tears in her eyes and said that she actually started crying while they injected the potassium. She said it was the worst kind of sting...that the potassium just burns under the skin. The nurse decided to numb her hand...but that took 16 little shots / pricks to get her hand numb. And with a bag of ice over her hand, the got the bag of potassium. The anti-biotics seem to be helping a little. But I encourage the nurse to find some kind of cough medicine AND sleeping aid to help her get some rest. I HATE, HATE, HATE seeing my mom in this kind of pain & suffering. The on-call dr. said she'll probably skip chemo this week since she's had a blood transfusion (Thursday) and a fever on and off all week. And her blood counts aren't very good. Time for her body to get a little break in order to find her strength again. One more cycle of the carbo/gemzar before we reassess.

I just have to add here that my Mom's doctor has not given her a prognosis. And none of us are asking. A few people have mentioned that I might want to meet with her doctor privately and ask...but if I am told a time limit...I might stop believing that she can beat the statistics. She is strong. I know that and she knows that. She won't even read about the details of her diagnosis in books or on the internet. She is planning her / our future as though we still have so much to do in years to come. And we do...we have so many plans. Travel, renting her house out, buying a new car for her, etc. As long as we keep reaching for those future goals, we believe we will reach them. I think the hardest time is now....when chemo is kicking her butt and her lung obviously needs to be drained again. But when her energy is there, as it was over the weekend. We are only looking ahead...way, way into the future.

HI, I have found cancer support groups -- but just curious about whether or not there are Lung Cancer support groups in the SF area...East Bay?

Not sure if this post should go elsewhere...I'll search around this site more.....but thanks to the Lance Armstrong Foundation web site, I have been directed to the Patient Advocate Foundation where they have given me a TON of helpful suggestions and advise in regards to getting financial assistance for my mom's medical bills. Being that she is a freelance art teacher, and has had to quit working, she is struggling to get the bills paid. Of course my mom's sister has taken over the organization of the bills and become close with Blue Cross, so we have some idea now of where we stand. Bottom ling, Mom is expected to pay $15,000 / annually to BC before they kick in 100%. However, we still have some medications that are not covered...like the $400+ appetite stimulant she refused to pay for the other day. But NOW...we have options. So, we still could use help to actually get the bills PAID. The Patient Advocate Foundation assigned me a case manager who I've spoken with over the phone and will continue communicating with as questions arise. He has given me the following web sites and summaries of what these programs can offer patients: Patient Advocate Foundation's CoPay Relief (CPR) www.copays.org 866-512-3861 *Copay relief assist patient with chemo &/or prescription drug copays for Lung Cancer HealthWell Foundation www.healthwellfoundation.org 800-675-8416 *Assists with copays & some insurance premiums for NSCLC Patient Access Network www.patientaccessnetwork.org 866-316-7263 *For NSCLC Chronic Disease Fund www.cdfund.org *For NSCLC Managed Rx Plans Inc. 800-799-8765 *He said this one might be the "end all" solution to co-pay issues. "Managed Rx Plans provides cost free prescriptions to individuals with long term recurring medication needs, accepting most major medical as payment in full, for all diagnoses. No income limitations. And lastly, if anyone wants a no-cost, unbiased, multidisciplinary second opinion consultations to any cancer patient: The Regional Cancer Foundation *I only have the local number for us here in the SF Bay Area 415-775-9956

Not sure if this post should go elsewhere...I'll search around this site more.....but thanks to the Lance Armstrong Foundation web site, I have been directed to the Patient Advocate Foundation where they have given me a TON of helpful suggestions and advise in regards to getting financial assistance for my mom's medical bills. Being that she is a freelance art teacher, and has had to quit working, she is struggling to get the bills paid. Of course my mom's sister has taken over the organization of the bills and become close with Blue Cross, so we have some idea now of where we stand. Bottom ling, Mom is expected to pay $15,000 / annually to BC before they kick in 100%. However, we still have some medications that are not covered...like the $400+ appetite stimulant she refused to pay for the other day. But NOW...we have options. So, we still could use help to actually get the bills PAID. The Patient Advocate Foundation assigned me a case manager who I've spoken with over the phone and will continue communicating with as questions arise. He has given me the following web sites and summaries of what these programs can offer patients: Patient Advocate Foundation's CoPay Relief (CPR) www.copays.org 866-512-3861 *Copay relief assist patient with chemo &/or prescription drug copays for Lung Cancer HealthWell Foundation www.healthwellfoundation.org 800-675-8416 *Assists with copays & some insurance premiums for NSCLC Patient Access Network www.patientaccessnetwork.org 866-316-7263 *For NSCLC Chronic Disease Fund www.cdfund.org *For NSCLC Managed Rx Plans Inc. 800-799-8765 *He said this one might be the "end all" solution to co-pay issues. "Managed Rx Plans provides cost free prescriptions to individuals with long term recurring medication needs, accepting most major medical as payment in full, for all diagnoses. No income limitations. And lastly, if anyone wants a no-cost, unbiased, multidisciplinary second opinion consultations to any cancer patient: The Regional Cancer Foundation *I only have the local number for us here in the SF Bay Area 415-775-9956

Hi, Not sure where to start or why I'm posting...other than just trying to figure out where we are. Mom is completely fatigued. She can't even imagine feeling this way for much longer. She just has NO energy. I took her over the weekend to a friend's wedding. I have been friends with the bride since 3rd grade and Mom didn't want to miss her wedding. But I'm afraid we might have not been careful enough...she was in week 2 of the 2nd cycle. Basically 6 weeks into chemo and she had just received the gemzar/carbo on Thursday. But at the wedding she was shaking hands with many people and her blood counts were probably low. This afternoon after running errands I stopped by her house (my grandpa's home) and kissed her on the couch. She had obviously been there all day. I knew the weekend trip up to the wedding probably wore her out. But when I kissed her 'hello' she was burning up. Had a fever of 101.7. Her cheeks were flushed and she was sweating. I called her oncologist and he prescribed an antibiotic. After running to 2 pharmacies (because of computer crashes at Walgreens) I finally got her the meds. I got some dinner prepared for her & she actually had an appetite. This was NEW for her. But around 9pm I realized I should get home to see my family (kids) before bed. Just as I was leaving Mom starts throwing up her dinner...along with a bunch of stuff from within her lungs. The normal stuff she spits up daily. The hardest thing is that Mom's vomiting all this time has been about 10% chemo related and 90% from a trigger in her throat when she coughs. And she gets into some serious coughing spells. The 2 lymph nodes in her chest seem to be putting pressure on her trachea or asophogus & when she coughs....it triggers the food to come right back up. So, there went dinner. She's lost another 11 lbs in the last 2 weeks. When the dr. saw that she had lost another 6 lbs between her weekly chemo appointments at her last chemo appt, he prescribed an appetite stimulant for her. Well, she had picked it up herself and while walking back to her car happened to notice the amount that was automatically deducted from her checking....$489 !!! Blue Cross did not cover this med! So, she ran right back in & returned the meds!! She said, "Oh, I think I'll just use self control and FORCE myself to eat...." =) But thanks to the Lance Armstrong foundation and Patient Advocate services, we are now applying for a bunch of programs that will start helping us financially. They all have different programs & services. One will reimburse us for what we've paid so far and then start paying for ALL meds from here on, one will cover all costs for transportation and one will pay some of the insurance co-pays!! I'll send another email with all the program names that I have been instructed to apply for by a social worker through Patient Advocate. That's the good news I've received. But the last thing I wanted to mention was that because Mom started seeing double vision last week when she threw up, her dr. has requested an MRI. Don't get me wrong, I feel that she should have had this from the beginning because of the nature of lung cancer....but as with all tests, it comes with more anxiety and depression....I am a nervous wreck once again. Mainly because the dr. is concerned...so that makes me concerned. She is having it done tomorrow at 8:30am. We'll get results Thursday. She is also completely winded so he has also requested another chest x-ray because he thinks she might have another plural effusion and will need another thoracentesis. I hope she gets one soon because she is SO out of breath. I know it's adding to her loss of energy. I know you all know what I'm talking about when I say how difficult it is to watch someone become so weak and sick....She said tonight, "What if I don't get a chemo break? What if he wants to continue this?...." I didn't know what to say. He wants to do another PET scan after the 3rd cycle. But then what?????

Cindy, I am so sorry for the pain you've gone through and for your loss. You are in my thoughts and I'm hoping that you find peace through your healing. Sincerely, Tova

OK, well I'm not sure if I should tell Mom that she just received the very expensive med (Neulasta) because all this time she thought the anti-nausea was the very expensive stuff. On one hand she might be relieved to know that she's only had the expensive stuff once....but on the other hand she might never ask for it again. =)

Nova, I read your response last night and every time I think about that rooster, I start cracking up. Just walking around my house today, fixing breakfast for my little ones, and I start laughing or grinning. =)

I thought Neulasta was the anti-nausea med?

A funny here: At her Thursday appointment Mom told me that she hoped the 2nd bag (gemzar) was almost done because she had to pee. So, the nurse comes over & we asked how much longer it would be. The nurse said about 10 minutes. So I explained that Mom had to use the restroom....the nurse said no problem, we could just help Mom walk over with the IV. She'd help her roll it over to the private rest room. But Mom of course said, "Oh that's ok....I'll just wait." The nurse looked down at Mom's toes & her red toenails were wiggling at the end of her sandals. The nurse (who reminded me of Mary Lou Retton) said, "Honey, you are wiggling too much...I think you need to GO. Come on, I'll help you..." So, Mom gets over there but not without almost crashing the IV pole into every little table on the way. She could not steer it straight. I said to her back, "remember Mom to use your left hand for everything" I meant, once she was in there because the IV was on her right arm. But she thought I meant NOW, so she changed the pole to her left hand. I couldn't help it....there I was cracking up while she walked because she was trying to steer and getting herself all tangled up in the IV. You have to understand, our family is a family prone to (little) accidents, trips, falls.... & sadly, not one of us can resist laughing at each other or at ourselves. Mom has always injured herself while creating and sculpting her art. Or from being the do-it-yourself woman at her home. She has dropped exacto knives on her legs that stuck and stood straight up, she has drilled through her fingers, sliced her fingertips, etc. And each time, we laugh because she's always so care free about it. No big deal...And so, we heal through laughter. We find humor in everything. It helps us get through. So, both Mom and I were giggling. It felt good...to laugh...it almost felt like there was nothing wrong...for those few seconds, we forgot why we were there..... Finally, out comes Mom from the restroom. The nurse immediately jumps up from the nurses station to help my mom. Well, since it was such a pain to roll the IV pole into the bathroom....and since my mom has always been very athletic & a sportsman-type woman, she just grabbed the whole pole, lifting it off the ground with her other arm, and carried the darn thing to back to her recliner as if she hadn't had any fatigue this past week. The nurse was shocked but at this point laughing with us. Then she looks at me and says, "So, calling your mom 'stubborn' is an understatement I guess, huh?"

Ned, Yes I agree. Isn't it irionic that when people are depressed, many of the side effects associated with anti-depressants......are more chronic depression??? As for being "knocked out", my mom has had a hard couple of weeks. The chemo is doing it's thing and has wiped out all of her energy. So, this past Thursday when she had her 2nd round of the carbo/gemzar combo, they also gave her something to give her energy. Unfortunately, I did not write down the name of the drug. The nurse told her that it would sting when she administered the shot....she said it would feel like a bee sting.....but my mom, with her great sense of humor said, "SH**! That was more like a hornet!!" The nurse warned her that side effects would include pain in the bones for a couple of days as the drug goes into the bone marrow helping aid a red blood cell boost. So, yesterday a friend of Mom's picked her up & "stole" her for a couple of hours. The friend put Mom out by her pool, catered to her, let her read her book & just enjoyed some ladies' time. Mom had fun. But this morning when I talked to Mom, she said that she tossed & turned all night. She feels incredibly achy in her bones & just can't rest. I reminded her that these were the side effects we were told about & that the nurse also told her to take Tylenol for the pain. The nurse also said that it would only last a couple of days. Unfortunately, my mom has never been very good at taking care of herself. If she's sick...she doesn't take off from work...if she's in pain, she doesn't take the Tylenol....she just won't take anything to help herself.....unless of course myself or other family members REMIND her. =) She's a little stubborn.

Yes, we just found that out the other day in Mom's chemo appointment. We told the nurse that Mom had been drinking wheatgrass shots from the smoothie store...the nurse explained that some things that claim they are "anti-oxidant" or claim that they flush "toxins" out of the system, could also flush out the chemo. No more wheatgrass for now...at least not during chemo until we talk to the doctor.

Thank you. I read a lot of information on those links you provided. I am impressed with the studies on mice. My stance is that you just never know....what if it does stop tumor growth? what if it does build up your immune system? (which is what many of my friends claim it is known for)....At this point, it couldn't hurt. It tastes good. My husband received a bottle from his friend on his last birthday and today I took the unopened bottle to my mom. She drank a few ounces & I tasted it. She liked it. So, I can't see it hurting much if we try it out. Again, thank you for the links!

Hi, I do believe that there are many ways to deal with cancer through nutrition.....I've known many people who believe more in holistic nutrition for fighting off various diseases. I have been researching nutrition since the beginning of my mom's diagnosis. I have read one book called "The Cancer Lifeline Cookbook" by Kimberly Mathei and Ginny Smith. This book lists 10 super foods for cancer patients. Flaxseed is on the list.....from memory here: mushrooms, tomatoes, blueberries, broccoli, flaxseed....I'm sorry but that's all I can remember and I've had to return the book to the library. I've just ordered my own copy on Amazon though & when I get it I can list all the 10 foods here. These foods help build up the immune system. It also has great recipes. That look and sound very tasty! A doctor (not my mom's doctor nor an oncologist for that matter) recently suggested a book called, "Beating Cancer with Nutrition" by Patrick Quillin. This book came highly suggested. I've also been talking to people about the drink called Noni. I heard of this years ago from distant family members. My family has been drinking it to prevent cancer. Those that have been drinking it, have been relatively healthy. Some friends of my husband's sell it. As soon as they heard about my mom's diagnosis, they all came together and want me to get some cases from them for her. They say that it really helps block or stop cancer from growing. I do believe that there are many facets to "healing" and fighting cancer that don't involve the medical industry. However, I am also one who looks at facts and studies. So, even though I've heard very impressive things about Noni, I would like to do some more research before I start investing in it.

My mom is also on the carbo/gemzar. But she only had the Ativan the first time. They didn't give it to her the 2nd week & not sure if they'll give it to her this week since she's getting both the carbo/gemzar again. It sounded as though it was for "first timers" of chemo. But she doesn't want it again. It knocked her out. I mean, it was fine to sleep for the 2 hours of chemo....but she said she can nap without it. I don't know anything about it really....just adding my 2 cents after reading other people's posts on the subject. But now I will keep an eye on my mom's state of mind. So far no depression -- but I will read up more on Ativan if this has anything to do with depression. It's supposed to help with depression, isn't it???

Mom has had her first 2 rounds of chemo. 1st week was Gemzar / Carbo. 2nd week was only Gemzar. 3rd week was "off". Then she had her bloodtest to see how chemo was working. But when we returned from our 5 days at our summer cabin, she was suddenly very tired. So we thought we might have overdone it up at the cabin. Once home, she was taking 2 hour naps in the morning and afternoons. We knew that fatigue was going to happen. But then Thursday she went for her bloodwork and all the numbers just crashed! Her platelets were 288 the week before and then last week they dropped to 27 !!!! They said they still do chemo - with doctor's OK, at 100, even though 144 is considered low. But 27 ????? Is that ok? Her feet have always been dry & our cabin has very dry dirt/sand that really dries your heels. Mom woke up the day after we returned from the cabin and her heels were bleeding on her sheets. Her oncologist said that now is the time that we need to wash our hands and keep her home very clean -- because of both the platelet count AND the low white blood cell count. The only thing that didn't drastically drop was her red blood cell count. I wonder if it had anything to do with the small, but substantial protein shakes we were feeding her between meals??? We've all been reading books I've checked out from the library about healthy cooking for cancer patients. It lists the top foods that help build the immune system and blood cells during chemo. If anyone is interested, (I'm sure it's been talked about on this site before)...it's called "Cancer Lifeline Cookbook". Great tasting recipes. =) After Mom's bloodtest, she looked pale. A bit jaundice. But today, she had pink in her cheeks again. She's still tired - but has been laying around, keeping cool as best she can....reading all the NY Times Best Selling novels I've been buying her. =) I'm hoping that the pink cheeks means her bloodcounts are up & they won't have to postpone chemo this Thursday.

I know exactly how you feel. I think we caregivers and / or family members have all felt that. Ever since Mom was diagnosed a couple of months ago, my whole world came to an abrupt holt. My life will never be the same. Of course, it's nothing compared to how my mom must be feeling, I understand that. And she is so strong in front of me. Probably protecting me. I hear so many people say that the statistics are just numbers....that my mom is a very strong woman....she can fight. She will fight....but the fear has come over me like some evil entity. I have been in a such a dark place over the past couple months. So scared. And then, finally, she starts chemo & I can breathe again. Her coughing has gotten better, she's not throwing up every meal (we're assuming the vomitting is from the 2 X 15mm nods in her lymph nodes in her chest which have been causing a gag reflex when she coughs...it has nothing to do with nausea)....and then I am walking down the street and that fear takes over me again.....I stop breathing & feel as though I've just witnessed a child run in front of a car...it's that panic, survival rush of panic that takes over my body. I start sobbing and want to scream......THIS IS NOT HAPPENING TO MY MOM!!!! I can't breathe, I gasp for air...my whole world starts to collapse.....and then I find my strength & exhale. I HATE, HATE that evil dark place called FEAR. I can't go there anymore. I don't have the strength to go there. I can see how we're just starting this rollercoaster ride. Mom has had 2 chemo treatments and we have so much ahead of us. How good will it get when it's good? How bad will it get when it's really bad? I'm sorry for going on and on.....I just know how you feel. You are so "normal". And from the other posts.....it appears as though we are all feeling these same very normal feelings.

I am truly sorry for your loss. No words can console you but please know that you are in so many prayers at this time.