Joppette

Hi Sue, (taking liberties here assuming this is your name) What a story of courage. What an ordeal. I understood so much of what you wrote about. What struck me most at first was that my calendar was FULL of what I thought were important appointments, commitments, and things to do. Once I heard the words "you have lung cancer", and they began to outline the surgeries, treatments, rehabilitations, etc., I went home, cancelled all of those silly appointments, commitments and things to do. Nothing seemed important anymore, nothing except of course for the battle. What you wrote here: I am not able to drive again. I can pick up a laundry basket, sleep through the night, bake, fix a meal and grocery shop alone. There are no promises given with any treatment, but the results of the Xalkori are more than I hoped. I know what it feels like to have your life slipping away. It is truly a miracle to feel alive again. I am struggling a bit trying to find a place for myself in the world again. I had worked full-time for many years, so being home, feeling good, and so much time to fill is a challenge. The rest of the world goes on." The world does go on. But I believe that even the tiniest things we can do are important in our tiny part of the world. I have not been able to drive for a while, but with time, I've found a lot of things to do at home that are fulfilling. I've picked up a couple of quirky hobbies. Check out this web site. http://www.homemadesimple.com/en-US/Hom ... /Home.aspx I've never been a crafty type person (still am not) but found some fun stuff to do to make little corners of my home, better little corners of my home. That gives me a great sense of satisfaction! But also remember a laundry basked raised, is someone in your home getting clean clothes. That is important and good. I almost feel sorry for the people that never had to face life at our level. They rush, rush, rush and can't stop to consider the small things. They are too busy rushing. And yet? If they ever face a diagnosis like ours, they will do what we did, erase that calendar, simple it down, and learn the things that are important. I think the small things are important. I loved your story. I hope to read more here. Check out the Just For Fun Off Topics, Daily Air here. It's just a place to check and chat up your day a bit. I've made some lovely friends there. I don't get there every day, but do like that forum. I only live about 65 miles from you. I'm just North of Grand Rapids! So it's nice to meet a fellow Michigander here! I sign my name Judy in MI, because we have another Judy here from Key West, and she signs here name Judy in KW or KW Judy. LOL. Anyway, welcome. I've taken up gobs of room here. LOL. Have a good day. MI Judy

Hi friends, First on my mind these days when I log in here, is our Judy from KW. She is such a big presence here, and when she isn't here, I always wonder. I went to her FB page today and see notes from a few of us there, but can't find an update on her. I don't understand that FB Timeline thing, so I may be looking in the wrong place. IF anyone hears from her, would you please update all of us here? I miss her. It's another beautiful day again. Very cold, but beautiful. The farmers have had to hire helicopters to fly over their fruit trees to force the warmer air to stay down with the blossoms, and not rise above them. I'm not an engineer, but I do know heat rises, and the warmth from the ground would be bound to rise as the temps drop at night. How interesting this is. I've never heard of it before, but it makes sense to me. The next time I sink my choppers into a big juicy apple, I will think about all the hard work that went into making it to my mouth! Our little lake has a couple of swans living on it. I'm surprised because the lake is very deep, with little shore at all. It's like a giant meteor fell zillions of years ago and make this 85 foot deep hole, and it filled with water. The swans don't usually nest here because they like the shallow lakes where food is abundant and near the surface for them. These two seem to like it here. Our lake is also full of big giant turtles, so I hope their little babies get a chance to live. I seem to be fascianted by Mother Nature these days eh? I think it's because I don't do much more than observe it as my days plod along. My immune system is weak, so I don't really have a lot of places I want to go to, and if I wanted to, I can't drive with the sleepies that I seem to have all the time. We're getting another blood test today to see what is up with that. I'd love to get more active, and think that would help in so many ways! Anyway, need to go hit the shower and get ready! Hope you all have a wonderful day, and I have a question. If you were to wonder about something today, anything! What is it you would wonder about? Judy in MI

It's early enough to start Thursday's Air, but I'll just tag in here for now. Janet, yeah for starting the Air for the first time! Thanks for that. I hope you got outside to appreciate blooming cherry tree! Ginny it's good to see you here too! And Diane, I understand about the scanxiety. The cough could be allergies too. I rem going to my Onc and ominously telling him of this hard cough I was getting in the morning, sure it was back. He asked about allergies, and I said I had some. He said that at night when we sleep, it affects our lungs and we cough hard in the morning. Said "don't worry about it". LOL. He clearly was not concerned! I hope and pray it goes well for you. Eric, it's always good to read of all your news! Hi MIke! Going to go back to bed and try to get some more sleep. Didn't sleep well last night. I am worried about Judy too. I pray all is okay with her. Judy in MI

Thank you Lillian.

Yep, and now as I look at "View New Posts" I see a bunch of junk the spammers have left. How sad.

Jane and Randy, Thanks for letting me know! See? There you go! I've missed all the action (spammers) and slept through all of it. Well, that does not erase the sentiments that I wrote today about the beauty of today and how much I'm loving it from my perspective these days. MI Judy

Well, it's so strange that this topic, of all topics, is so inactive. I joined this site on April 2, 2010, and up until recently, either opened the AIR windows, or joined in each day. Over the last two years, I've enjoyed getting to know so many that belong to these boards. Hearing about every day lives, activities, and even the weather was very intresting to me. Most important was the updates on how folks were doing in their journey in life. There are other forums to do this, but since is the most active, I think a lot of us just gathered here each day "to talk". It felt like a family here. In the last two weeks, I've been in the hospital 3 times because of the rough stuff that this chemo regime is doing to me. I'm not complaining, it just is what it is. They had to delay the last chemo for a blood transfusion, and then they cancelled the chemo regime I was on completely. My body won't tolerate it. So I'm back on the Carbo routine I had before with some Navelbine thrown in there. I am hoping this will allow me to get back to somewhat of a normal life. One of the things I've missed most in my 3D life is getting in the car and driving. I just couldn't risk it. I didn't know about Hemoglobin, or platelets, or white blood counts, or any of those things. In my journey with this five years ago, I didn't (thank you God) have issues with this. But this time around, those blood issues left me so exhausted that just carrying on a conversation on the phone has left me out of breath and heart racing. Each day (that I had internet), I'd come here to see what was up with the friends I've made over the last two years. Even if I couldn't write, I knew just reading the antics would make me smile. Well....you know. There's just not been much going on, unless I've missed all the action when I've been sleeping (which has been a lot). Anyway, today is a new day. In my neck of the woods, the sun is shining again! It seems to be a chronic condition around Michigan lately, and I'm loving it. It's chilly out, but I have the window cracked so I can hear the birds chirping outside. There's a nest cradled into a nook in the corner of the house, and I can see Mama bird flying back and forth, over and over, bringing food to those very loud and hungry little ones. I have to smile when I see their skinny little necks craning out of the nest when they hear their Mom's call. All around me, the world is waking up from it's long, dreary and brown winter. The lawn is lush and green, the trees flowering in that pretty way they do this time of year. My tulips are in their full glory, sharing the sun with the dafodils next door. It's just incredible to watch from my perch on the chaise lounge next to the window. There is some kind of mini apple tree outside the window that is pregnant with it's blossoms, and if I look close I can see about ten thousand big, fat bees just buzzing their brains out. I never watched this close before, but I did this time and I see them come in with their bee legs hanging down, and when they leave those legs are covered with this yellow fuzzy stuff that I guess is the pollen they need for their nests? What a marvelous discovery - and I wonder how I missed that all these years on this earth? LOL. Wishing you a beautiful day today! Judy in Michigan

Wishing everyone a beautiful and blessed Easter.

I know it's Wednesday LOL. But had to pop in and thank Shirley for her kind comments, and the fun bird stories. I loved Eric's response to the wedge club for chasing geese! So funny. Ginny, those geese are big and mean with you go near their nests. I have a funny story from when I was in Sales, years ago. A customer had geese in the pond, and all of us sales people had to walk by to get in to sell our wares. The geese would attack and chase us, for me high heels a clacking and briefcase a slammin'. LOL. I swear the buyers inside were watching and laughing their butts off at us poor sales people. Mean mean mean. LOL Now that I have internet back, the other company will show up today to offer their solution. LOL. Kind of like when you feel horrid, so you call the doctor and make an appointment, and magically by the time you walk in the door you feel better than you've ever felt in your life! LOL again. I feel good today so I'm LOLing a lot. MI Judy

My heart goes out to you! God bless you. MI Judy

Good morning Eric (and anyone else that stops by and says HI)! As I've written a bit, my internet provider is about to find themselves without my business (yeah, I'll show them LOL). Hoping this new solution will solve my on-line blues. I've been home-bound for the last couple of weeks and it gets lonely when you can't connect on line. Snow Eric? Isn't it strange the weather these days? We are in the rainy, stormy mode right now, but like you, we can see four seasons in one day as well. So I understand. It does make life interesting. I witnessed an awesome display of Mother Nature the other day. I was sitting, looking outside, when I saw a beautiful hawk flying as fast as he could, with a tiny little red winged black bird fast on his heels (do birds have heels?). It's a sure sign of Spring here when the little guys take on the great big guys fearlessly as they defend their nests. I always love seeing this as I love seeing the underdog win in any situation. The great hawk lit on a branch on a tree right in front of my home, and I noticed a little brown squirrel at the base of the tree chattering away at the hawk. The hawk was looking down, and I could almost hear him debating in his little hawk brain, "so do I go for the eggs in the black bird nest, or do I swoop around this tree and come down and grab that yummy squirrel." LOL. He took off from the tree, and I watched to see what he would decide when that little black bird came back at him and drove him off over the marsh where his nest was. It was amazing. I love how God makes stuff like this. It's been a rough go of it for me. I wrote in LC Survivors index about it and it does not bear repeating. Today I am thankful that a lot of the worst has passed now. I begin my next cycle of stuff this Thursday, but it's good to see the end of Cycle 1 and on to Cycle 2. I made a calendar with a count down to the "end of chemo" days on it. On the day I started it was 61 days left. On each day I drew pictures or found quotes that correspond with the number associated with that day. So it's 51 days to go now! God willing. I found something to celebrate on each day to help me stay focused on the goodness of each day and try not to focus on the other. I'm in the easy days right now. Yeah! I've been so tired I have not driven a car in over a month. In the last few days I've caught up on my sleep and am hoping today is the day I can actually get in my car and drive somewhere. Anywhere! Wishing good days for all. MI Judy

Hi again! You can get just about anything you need for the pain that accompanies chemotherapy and the neulasta shot. For a lot of folks, pain meds like Vicodin, or morphine are not needed. But if they are, you should ask for them if she seems to be in pain. I take morphine immediate release for the breakthrough pain from the neulasta shot, which is the bone pain. In addition to that I take MS Contin which is morphine extended release that is a slow release pain medication to help my body stay ahead of the pain I'm in. Five years ago, I had my left upper lobe removed, and this time had my right upper lobe removed. The pain relief needed, in addition to the already mentioned is for the muscle, and nerve pain associated with the surgeries. They actually cracked a couple of ribs when I had the surgery, and had to dislocate my shoulder as well. I am still on the mend for that hence the extended release medication. I've talked to lots of folks that have had surgeries and different chemo's and some folks have pain, and some don't. But no one needs to suffer. My pain doctor told me "if it hurts, you call me." He cautioned me from playing "brave" when it's not needed, and we need all our energy devoited to healing, and not to feeling pain. Take care, Judy in MI

Hello again, I have not been here for the last few days (again) because my internet just has not wanted to work. I have a new service provider coming in on Wednesday to change to Satelite, and am hoping that will help. I'm a pretty regular "poster" here (LOL), so if a few days go by, it's likely that I just can't get on line. Update is that cycle one was finished on the 24th, and I am thankful for that. It was a rollercoaster ride for sure. There were normal and expected side effects of muscle and bone pain, fatigue, loss of appetite, and nausea. But there were a few I didn't know about or expect. I kind of knew about "chemo brain" but this has been something else! Just taking my medications has been a challenge from getting the pill out, to putting it in my mouth and swallowing, to writing it down that I took it. If anything distracts me (like a phone call, dog barking, squirrels LOL or other), I can forget where I'm at in the process. The vision changes were a surprise. At first I was getting what I can only describe as flashes of color. My floor tile is multiple shaes of gray, with tiny specks of blue in it. The blue became this intense cobalt electric kind of blue that hurt my eyes. The alarm clock display was so bright in the dark that it made my head hurt. Other days the vision was just blurry for no reason. I've talked to the doctor, and they feel that it is probably side effects of the chemo. They offered to do a CT scan of the head just to make sure that the cancer has not spread, but there's no reason to think that, and I don't. They did a scan in January, so it would be dramatic for it to change so fast. They think the chemo may be causing these migraines that don't cause intense pain, but instead cause vision changes. The mouth sores surprised me too. I got them five years ago, but only after the 4th cycle. These started a few days ago, and have been disturbing. I just didn't expect it nor did I have it this severly the last time. Yesterday they prescribed a BMX mouth wash that is a pain killer that works well. It tastes awful, but who cares? In addition, they prescribed a anti-fungal medication (Nystatin) that is supposed to help get at the root of the problem and solve it. I SWISH and SPIT the BMX, and I SWISH, SWALLOW and SPIT the Nystatin. So I wrote them down in my medicine log (for sake of abbreviations) as S&S for BMX, and SS&S for the Nystatin. My abbreviations at least gave me a little grin. The other side effect that I didn't know about or expect was the intense hearing issues. When the chemo was first infused, I got these incredibly loud whistle sounds, that were high pitched and loud. After that, I'd get this hum sound that was loud and distracting to say the least. In the last couple of days it has turned into a loud "white noise" kind of sound. They said a rare side effect of the chemo (I think it's the Cisplatin that they are blaming) is hearing loss. The options are to consider cutting the dosage back, or stopping Cisplatin entirely and going to Carboplatin, which I've had before. I'm supposed to start Cycle 2 this Thursday. My Onc. and I are meeting first to talk about all of this and decide what the next steps should be. I don't know what he will advise, and I don't know what to ask, so I'll just wait to see what he has to say and we'll go from there. Now that I have internet (hopefully long enough to post this), I hope to go back and catch up with all of you on the dialy AIR. I've missed reading that every day. It always manged to give me a smile even in light of this tough stuff. Judy in MI

Hi there! I am having the Neulasta injections after my rounds of chemo, to do exactly what you, Randy and Diane described. Like Diane, I too have had bone pain. For me it's been a little rough (but horrible would be way too strong of a description). The pain medication they have prescribed handles that, and I'm doing fine. Everyone is very different in how they respond to medications. And if Mom has already had one injection, and didn't have a painful reaction to it, it's likely she won't with subsequent ones. The shot is one that amps up the bone marrow to help boost the white blood cells. In some of us, when the bone marrow gets amped up, it can cause some pain. But that is a rare side effect from what I've read on it. Judy in MI

Thank you Ginny! I appreciate your support. I did find out from my Gilda friends that there are a few things I can try. First off, get rid of my whitening toothpaste, and switch to a mild baking soda paste. They also said to stop using my electric brush (which brushes quit vigorously) and use a soft hand held brush instead. They gave me advice on a perscription to ask the doctor for too. So that all made me feel like I can get a handle on that issue. My pain doctor doubled my pain medications. I guess it's a good thing I am a pain med "whimp". He had me on such a light dose because of that, but now when I really need it, I can bump it up to twice what it was before, so that will really help with the pain. As for the neuropathy? I didn't know it but there is a medication they can give me to help with that progression as well! Yeah. I'm so encouraged. So with all of that - I feel much better. I just never had to deal with issues this bad before, and had no idea how to go about dealing with them. MI Judy

Hi friends, I wrote a bit on today's Air, but wanted to share more details here and ask for advice. MOUTH SORES! Five years ago, I got them but only after round three, so it was a short amount of time, and even though they were awful, I was able to tolerate it. I have just finished round one, and they started tonight. I can't believe it. I have no idea what to do. I've been doing the baking soda/salt solution since day one, but it's obviously not working. I've lost a ton of weight because of my appetite issues, and now this? I am dealing with a lot of pain as well in so many different areas, and am noticing that the neuropathy is starting in my left hand finger tips. If this gets much worse, I am afraid I'll have to discontinue the chemo. I really don't want to have to do that. If anyone has any advice, or encouraging words, please share them here. I so wanted to face this with strength and an optimistic attitude, but how do you do that when your mouth is full of open and extremely painful sores? To me that is the worse side effect of the chemo. Anyway, just a cry out. I had moody internet this past week, but it seems to be working for me right now. Am thankful for that. I am thankful for any advice you can give me on the other too. Judy in MI

Well, I am glad Judy that you found some humor to share. I so need it right now. I'm really sad tonight as I see the course that this chemo is taking. I"m not sure I'll be able to continue. The bone pain is extreme. It's in my spine, in the lower part of my back, and in the bone between the ribs, and the rib cage. IT is very painful. I've put a call into my pain doctor to see how much I can ramp up my morphine. But the thing that really has me freaked is the mouth sores. They are starting already! I'll write a separate post on this as I'm desperate for advice on it. Lastly is the fatigue. I am exhausted. I can't remember anything. When I take my medication, I have to get the pill out, and lay it down. I then write down that I have it and take the pill. Then I cross the time out so I know for sure I took it. If anything happens in between, I will forget and get mixed up. I'm so depressed and sad right now. MI Judy

P.S. thanks for the warning about the numbing cream for the port. The nurse "highly advised" me getting it. Thanks for the heads up. My hearts go out to all in the battle right now. There's a few of us huh? But thanks to all of you warriors out there helping us get through it. We are all winners. Yes.

Well, it’s Friday! It’s gloomy and cold here now. No complaining, because we just went through two weeks of the most amazing warm weather and sunshine. Looks like we’re getting normal March/April weather for a week or so. That is okay. Was not ready to retire my comfy sweatshirts. Yesterday the port was installed. Didn’t bother me a bit. Four attempts at putting an IV in did. Wow. I’ve never had issues with that, but for some reason my veins were really groggy yesterday. I leave here in a little bit for my two hour Navelbine infusion. This time in a port which I’m sure is going to be much better. Right arm is still hurting a lot from the IV Navelbine last week. That will never happen again. IT’s the port or it’s not happening. I’m looking forward to a long slow weekend. Rumor has it the Neulasta shot can cause some bone pain? No worries. I have plenty of the right medications, and if need be, I’ll take them and sleep. No matter what it is going to be okay. Had a couple friends come over yesterday and do surface cleaning for me. So nice to have that layer of dust and grime gone! How nice that people are willing to help that way. Well, I’m good. Going to head out soon. Wishing you all a good weekend! Judy in MI

This may be the longest running single-person-to-herself post in the history of this message board. It's 8:30 and I've got to run but the sun is shining, and it's just beautiful out! Wishing you a beautiful day. Judy in very warm Michigan

When I posted earlier, it was REALLY early in the morning. Now with the sun shining, I just wanted to wish you a lovely day. MI Judy

Ah, I woke up at 5:00 feeling better! The right arm is healing for sure. It hurts like hell, but the swelling is down, and I can tell it's not going to get complications. I am so grateful. HOpe you all have a good day! Judy in MI

Good morning Petunia, I'm so glad Diane came in here too. I agree with all that she said. We are all different. As for wigs, I got a synthetic one because the woman that owned the wig store is a cancer survivor. She counseled me to not spend the big bucks on the real hair wigs. She said they are too expensive, but also extremely hot. So I got a pretty one that was synthetic. Like Diane, I didn't wear it often. I did wear it if we were going out, where I didn't want to talk about cancer. Obviously when people see you are bald, the topic comes up. So if it was a nice night out, I'd wear it. Otherwise I wore a lot of soft, warm hats. The American Cancer Society does sell inexpensive hats too. Here's a link to their web site for their cute hats. I'm sure they give stuff away too. But I found a lot of stuff here for not much money. http://www.tlcdirect.org/ I had Carboplatin/Taxol the first time. The second time I'm getting Cisplatin/Navelbine. I have to be very thankful because my cancer did not spread beyond the lung, so I was able to have surgery to remove it both times, and didn't need concurrent radiation at all. Your Mom's has spread hence the other treatments they are offering. For the brain issue, it is highly recommended with SCLC to have PCI. I know that here as WBR, or Whole Brain Radiation. I recently heard it referred to as PCI so I knew what you were talking about. Frequently the lung cancer will present itself in the brain with SCLC, and having the radiation can avoid all kinds of complications and problems. My Mom had SCLC and had WBR with excellent results. While it didn't save her life, it did prolong it with good quality of life. Venting is ALWAYS good. That is why this place is here so vent away. With it being presented in her liver and adrenal glands, it's safe to assume it did spread to her lymph glands. Second opinions are always an option of course. Don't worry too much about the time lines they gave you. Those are based on statistics because they have to be! But as you know from reading here many people just don't follow those time lines. My treatment is going well with the chemo. I am having some tough side effects now,but I am doing okay. I have good pain control, and the ability to rest when I need to, so it's going good. With statistics, they tell me that I have a 50/50 chance of the cancer coming back given that it would be the third time it came back. But that is IF it comes back. I"m not worrying about time lines. I just want to live the best I can for as long as God sees fit and let him worry about the rest of it. Take care, If you have more questions, please let us know. Diane gave you good advice on cancer grace. It's a great web site to get feedback (not medical advice). The site is http://www.cancergrace.org. If you sign in there, use the same one you have here so those of us there know it is you! God bless you. Judy in MI

Since my Monday Air was so lonely, I am changing it to Tuesday and seeing if maybe it won't feel so lonely today! My posts lately haven't been much fun, and certainly not "off topic", but it seems that this forum has become "the" place to come share our daily lives, and I am so thankful for it right now. Thank you to everyone that responded to my posts this weekend. They educated me, and assured me that I'm going to be okay. That is just awesome. Bud, thank you especially about the Cisplatin vein issue. It is swollen and red today and it reasurred me to read your post. I did go to Cancer Grace, and Dr. West did advise me to call my Doctor and talk about it. I did. They said to wait until Wednesday. It is red, and hot and hurts, but I am icing it and doing okay with it I guess. Dr. West also said I can go off Cisplatin and that there are other options. He said I could go back to Carboplatin, though using it again can cause cummulative issues, and I remember that drug before, and it was one that caused a tremendous amount of muscle and bone pain, and other issues. He said a non-platinum doublet with two agents that are often paired with a platinum can be used, like gemcitabine and navelbine, or some others. They are certainly fine alternatives and reasonably comparable in efficacy for advanced NSCLC (some may be a shade less active, but certainly in the same ballpark), though not as well studied or commonly used. I don't know what Gemcitabine is but my next job is to look it up. Today? Ears still rininging. More aches in the muscles today. Nausea okay since I called this weekend and got on Zofran. A friend recommended Ativan for it too. At this point I'll take anything and everything. I need to keep my weight up, and my appetite is zilch as it is. My pain doctor did up my doses of medications. I'll take the extended release as he prescribes to keep an even keel. Then I have the immediate release to help me with those flare ups such as my right arm right now. It's nice to have these options. It's supposed to get to 82 tomorrow (Tuesday that is almost here). Insane. But it's so gorgeous with zero humidity. I hope the rest of you are getting this beautiful stuff. I may have to break down and turn the air on for the first time tomorrow. When that afternoon sun beats in on my Western exposure, it does get a bit warm in here. No complaining though. MI Judy

Thanks Bruce for letting me know. I've already had Carboplatin, so I don't know if they will "let" me have that again? But the ringing is loud, so I'm thinking they will be making a change soon. Also, on the Navelbein, don't know if anyone is still watching here, but I have a question. They had to put it in IV the first time. My forearm hurts a lot where they put it in. The vein is sore, and swollen. The site where they put the IV feels "firm" and unlike the rest of the arm. It's not swollen, or red, or God forbid red streaks, but it hurts enough to have me concerned. Anyone with experience with this? MI Judy