Joppette
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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
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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
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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
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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
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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
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Kathleen, has anyone told you about Cancer Grace yet. It is a web site we go to for more information about our diagnoses. They won't give medical advice, but they will give you good information. It's http://www.cancergrace.org
Use your name you signed in here with so we know you are who you are there! The good doctors will post and give you good information on what you are looking for.
MI Judy
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Good afternoon! Another amazing day here in Michigan. Supposed to get to 80 today! This is freaky! It is so nice, but not good for our farmers. Poor guys, their fruit trees are blooming way too early, we know we'll have at least three or four frosts before Memorial Day, and that will ruin their crops.
Today started rough. I did good like you said and got on a schedule with the Compazine. But then I slept through the time of a dose, and woke up horribly nauseated. Fortunately R was here. He got me a big glass of ice water, one of my pills, and a yogurt. All of that helped me so much that I was able to get showered, and go to my girlfriend's breakfast/brunch party. It was lovely.
So I forgot to take the Compazine on time again, and it reminded me when a big wave of nausea hit me. i took the medicine, and went home to nap for an hour. When I woke up I had a bowl of ice cream sherbert, and felt good! I am thinking the sherbert is a solution for this! Because of this, I"m going to go get those little chocolate dipped ice cream balls too! I can't remember who makes them, but am thinking that this might be a nice treat as well. We shall see.
If I can get on top of the nausea, I'll be doing good. If anyone here has experience with the ringing in the ears too, please speak up! IT comes in waves, but I was warned that it is a pre-cursor of hearing loss due to Cisplatin. I can't imagine it would happen with one treatment, but am curious if othershad the same experience.
Have a good rest of the weekend!
MI Judy
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Hi Petunia,
I was surprised to find this from Thursday with no one posting to it! One thing I think I want to start with is this: lung cancer is a disease. No one deserves it, smoker, ex-smoker or never-smoker. Not eveyone who smokes gets this disease, and not every who never smoked is safe from this disease. If you look at the statistics, a lot more people get lung cancer that never smoked, or quit over 20 years ago. So please don't blame yourself or your Mom herself.
As for the other questions about chemo, and others, could you give us more details of what is happening with her treatment? Was it operable. Are they doing radiation therapy. Did it spread beyond the lungs to the lymph nodes or even further. All of these details will help us. And then if she did start chemo, what kind of chemo is she being given. Some common names that I'm familiar with are Carboplatin, Taxol, Taxetere, Cisplatin, Navelbein, and there are many others. That will help us.
So if you could give us as many details as you can it will help us to help you!
Judy in MI
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Thanks for the advice on the nausea. Since it is flirting with me in an unpleasant way, I am taking your advice, and am on Compazine every four hours now.
As the day progresses, I'm not feeling well. I kind of feel like I am coming down with the flu. Nausea, aches in the muscles, and my skin hurts. We know it's not the flu. I better get out my list of home remedies and get that going. Now....where did I leave that list of home remedies?
MI Judy
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Hi all, it's just cresting afternoon now, so Good Afternoon! Thanks for all the advice my friends, it helps. Judy you are right, the side effects are becoming more apparent today. The nausea is still not an issue, but i'll take your advice and take the medication at bed time tonight. Bud, the biggest issue right now is aching muscles. Not horrid yet, but I can tell it's going to be an issue. And my ears are ringing big time. They mentioned that a rare side effect of Cisplatin is hearing loss and that if my ears started ringing to let them know.
So of course, that is what is happening. There is nothing they can do about it this weekend, so I'll wait for Monday and see. Hopefully it's going to die down and not become an issue. If the band is still playing on full volume on Monday, I'll mention it so they can figure out what to do. One of the guys in my Gilda's group did lose his hearing from Cisplatin. He has two hearing aids now. His happened over time though. I'm glad the doctor gave me the warning, because I"m not sure i would have told them about it without it.
Last night I slept like a baby! And I slept in until 9:00 which is huge! I think the time release morphine is responsible for that so I am so glad they thought to give that to me.
Today is going to be a slow day. I need to run to the pharmacy for a prescription, but I think that will be it. Tomorrow I am invited to a girlfriend brunch/lunch that I hope to be able to go to. But we will see....
Ok, I need food in my tummy. See you all later
Thanks for your input and advice both here and on my Care Page for those of you following there.
Judy in MI
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And mighty fine air it is here. The windows are open, and the fresh air is amazing.
If someone beats me to this, please just merge mine in, moderator person!
Chemo went okay. IT was a long day. Wasn't happy with the burning in the vein for about 2 hours, but they said it was normal and would be better once I got the port installed. That is scheduled for next Wednesday.
I didn't have a good night after chemo. R and I got into a horrible argument (his fault of course) and I developed a raging headache. I dozed on and off all night, enough to wake up and say "yep, the headache is still there" and then sleep again. Today after a light breakfast and hot shower, it seems to be much better, so I don't think it was chemo, but rather high blood pressure and angst.
I was surprised to wake up at 4:00 with nausea so soon. They really thought I wouldn't need anything for nausea, but I was slamming that Compazine as soon as it started. It's much better now. AGain, I think having a little bowl of cereal and a yogurt for breakfast staved it getting worse. I do remember that when I let myself get hungry the last time, that it was worse. So I'll try to discipline myself to eat small but often now.
Other than that I'm okay. Still trying to adjust to the oxygen and tubes. Does anyone know of any tricks to train the stupid dogs from contstantly standing on it. I get up to go and my head gets yanked backwards because of them. I swear my ears will be lower as a result of this!
All I can say is that life sure does make wild twists and turns when we least expect it. It tells me to just enjoy each day for what it has, and let go of the bad.
Funny this morning, I couldn't find my wedding ring. I think I went all over the house for like 10 minutes looking for it. I take it off to put lotion on as my hands feel so dry since I got out of the hospital. AFter searching high and low, I gave up thinking it's bound to show up right? AS I sat here catching up on emails and posts, I look down and found it! Right on my finger where it was the whole time!
Oy! IT's too soon for chemo brain! LOL.
I'm going to find a way to get outisde and enoy this weather. IT's spectacular. Hope you all have a wonderful day.
MI Judy
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Well this is kind of discouraging for me (it's okay, I'd rather hear the down side than go into it thinking it's the cat's meow.) I get mine in next Wednesday.
Yesterday was my first infusion of Cisplatin and Navelbine, and I was wishing I had a port. I don't know which one hurt more, but my vein was on fire through the whole thing. Today my forearm is very sore at the site of the IV, and it hurts up the vein. AS long as I don't touch it, it's fine! So I'm not touching it!
MI Judy
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Janet - no answer here! However I am about to get a port put in next week, so I checked this out, out of curiosity. I'll be back to see what our "experienced port" people say!
MI Judy
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Great pics Bud! What a lovely family.
Well the sun is beating down on me as I sit here in the West facing window. It's awesome. The temps are forecasted to be 70 something for the next seven days. That never happens here. We are loving it.
I'm trying diligently to not be nervous about tomorrow, but I'd be lieing if I said I was not. I am. Good news is that the cisplatin/navelbine cycle is week one and two, and then week three is off. Week four is then week one of the next cycle! So I will be done (if there are no complications) by the last week in May! That would be lovely. I just read that back over and it sounds funny. But I think you get it.
They are changing the pain meds too. I was on Immediate release morphine and complaining about being drowsy so much. I need the pain meds. I tend to try to skip them because of getting drowsy, but can tell that I pay the price in pain and not breathing properly, hence not healing properly either. I have a script in the mail to me for the time release kind, and think that will space it out better so I don't have these highs and lows.
Judy in MI
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And oh it's going to be good here today. High of 60 lovely, warm degrees! I can't wait to get outside. So this will be quick.
I have a baby shower to go to today. I love baby showers. I don't love the silly games they play, and usually find that I just have to "pee" when they begin. LOL. Maybe I'll just try to get into the spirit of it all today. I mean who does not love to guess how many diaper pins are in the jar (when no one uses diaper pins anymore). Maybe it should be velcro straps? LOL.
Day 2 of sleeping like a baby again. I will never, ever take sleeping the night through for granted again. It's the BEST feeling to wake up at 7:00AM and the last memory is of laying down at 11:00PM. AH! The "every two hour" waking regime was getting old. This is so nice.
I'm thankful for the sun that is shining. Thankful for a baby that is about to be born that is healthy. Mommy to be is too. A year ago at this time, she had a failed pregnancy that was agonizing for her. Now? Much happiness for all.
I think I'm going to try to remember to always add a thing that I'm thankful for in this post every day. I think it's probably a good thing to start.
I know this is Saturday so it's likely not to get many visitors, but for those of you that do? Name one thing that you are thankful for today please!
MI Judy
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Kasey, this was fantastic. What a story. I could relate to the other posts you could write with titles like "How Lung Cancer Changed my Relationships with Friends or rather Friends with ME".
Some of my friendships have been deepened greatly and are richer and better than ever. Surprisingly some of the friends I thought were my closest friends have backed away, completely.
What kills me is that people are afraid of me (it). I'll see someone at a gathering, and she will look at me, and no one is around so the obvious thing would be to say HI, and she turns her back and walks away. I know that is insecurity, fear, etc., but it still hurts.
Ah, I'm fresh back into this thing again, so I'm super sensitive all over again. I guess it will get better with time.
Good job on the article.
MI Judy
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Bud, I laughed at the picture you painted with the big chair. We have one of those for R. He and 100 pounds of dogs fit in it just fine! LOL.
Judy the duck! I love it. She knew you were special when she heard your name! That is a cool story.
We did miss the Northern Lights but not because they were not here. We live 40 miles from Lake Michigan, and they reflect solar events really well. A lot of our friends saw them and said it was about a 45 minute light show that rivaled the best 4th of July firewords display. It was full of every color of the rainbow, and quite intense. I have no idea where we were, but we didn't even realize they were happening. Sheesh.
As for chemo, I don't start until next Wednesday, the 14th.
R is out for the evening at one of the Gilda's Club laughfest events. His company bought out the house for a dinner/comedy show tonight. It began with a strolling dinner at 5:30 and the show starts at 8:00 to 10:00. That is way too long of an event for me! So I went shopping today. I found these super soft, medium thick sweat shirts in bright and fun colors at Penny's. I bought 3 the last time. They were $5.00! So I went back and bought the other 3 colors. When I got home, I laid down for a late afternoon nap, and am now waking up with a cup of coffee.
If I don't nap, I sit in my chaise lounge and nod out all night, trying to hold off sleeping until later. I know if I fell asleep at 9:00, I'd be up at 3:00AM for the day. So I got in a nice one hour nap and am ready to rock and roll now! Well at least until 9:30PM. LOL.
MI Judy
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PCI?
in SCLC GROUP
Ah! Well I do know WBR, or Whole Brain Radiation! My Mom and one of my best friends both had it. Both had marked improvement in their well being, and symptoms from the brain lesions. They did not have any cognitive issues. The only complaint I heard was that it caused minor fatigue, but they both said it was not a big deal.
I could see almost immediate improvement in both of them. My friend's left side of her face was paralyzed from the tumor, so one side of her mouth and face drooped and her speech was slurred. By the second treatment, her face returned to normal, and her speech was normal.
My Mom was having Grand Mal seizures. They were violent. They subsided after the first treatment.
MI Judy
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Hi, I wanted to welcome you here too. Judy from KW goes by the name "jaminkw" both here and on the cancergrace web site. I sent her a private message asking her to check this post out to see if she can help you!
Judy in MI (the other judy who is in michigan)
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PCI?
in SCLC GROUP
Hi there! Well, I googled PCI because I never heard of it and all I couldn't find a reference to this. Maybe if you gave a bit more detail, we might be able to help!
Have a good day.
MI Judy
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IT's 3:00AM. I have got to stop this middle of the night stuff. I can sleep well, but if I wake and feel good I want to stay up and enjoy that. Then I'm tired all day. I know if I'd make myself sleep at night, I'd feel good during the day but my stubborn pea brain won't get it.
I enjoyed reading the responses yesterday. I would like apologize for my comment about the Tarceva eyelashes. You know, people make silly comments because they just don't know. That is what I did. Tonight I googled Tarceva eyelashes, and what I saw was terrible! I wouldn't wish those eyelashes on anyone!
Lily, your duck story was funny! Don't mean to laugh, but picturing those big flat feet, slapping that mud, well, I just had to grin! And here Janet is taking on that ornery curmudgeon of a rooster to protect her duck babies. LOL. And then to see Janet try to psycho-analyze her rooster is even funnier!
Janet, the gift card idea is brilliant! I may have to go to that. But we both agree that having these helpers is so wonderful. How blessed are we?
So the oxygen technician lady came by yesterday. The good news is that I qualified for the conserver regulator. So now my little C tank lasts 12 hours, rather than 3! I was given a teeny little B tank that will last 3 hours, which is nice for quick trips in and out of stores, church, etc. My larger E tank is now good for 16 to 20 hours! Wow, this will make getting around so much simpler. This allowed me to get rid of the really big Q tank that was strapped in the back of my car. I used Q for travel times. I like this new system. They have a different way of configuring the lengths of the hoses, and more options for other conveniece items.
What was best of all was that she came in, she was relaxed, and when she saw my big list of questions, she didn't get that "deer in the headlights" look. She spent a couple of hours there explaining everything to me and I sure do understand all of it better now.
Like this. Before yesterday, I was told that Saturation % has nothing to do with why I get so short of breath (SOB). Wrong. When I am SOB, the body takes oxygen destined for extremities (like hands and feet) and instead routes the oxygenated blood to the vital organs which need it more. That explains why my hands are so cold that I need to have my heating pad on most of the day trying to keep them warm. That also explained why I've been feeling so light headed.
I called the "old" supplier and asked them to come pick up their equipment. Of course then the manager calls to see if he can salvage the relationship. I'll call him tomorrow. I just don't get it. They didn't explain anything well, which led me to calling the with a lot of questions. I ordered an oxygen testing meter, which they didn't deliver, even after 3 requests for it. Finally I cancelled the meter order, and got it elsewhere, and what do they do? Of course, deliver the unwanted meter. I complained on the phone and to the delivery person about them delivering tanks that were less than 1/2 full. Both of them promised it wouldn't happen again. IT did, twice. I told them I was frustrated and hoped that these kinds of issues would be resolved soon. They were not, and I didn't get a call from a manager. But finally fire them? The manager calls.
Oh well, no big deal. I'm really pleased with what I have now so that is good.
Well, it's time to get back under the blankets and snooze again. The wind is howling, and rain is pelting the windows. It's such a weather statement that says "get back in those blankets and sleep, it's nasty out here". So I am going to obey! i guess a cold front is blasting in. One more roar from old man winter.
Have a good day today. I think I am going to do just that. After a bit more sleep.
MI Judy
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Good morning all!
Janet, I'm picturing you teaching that rooster a thing or two and it's making me smile. I have no doubt you'll come out of this the winner! Judy. I would not have reached for eggs that had an occupied nest either. LOL.
KW I had to find a picture of my favorite way to eat French toast (which is really any way!). Anyway, yum!
I'm not on Traceva, as you know, but crazy, out of control eye lashes sound like a really good thing!
Janet, I understand about the schedule changes too. They change just one thing, and it starts a chain reaction of all the other things that have to change around it. It's a hassle.
I'm very lucky that a bunch of women at church are mobilizing for the beginning of chemo next week. They asked what I wanted, so I told them. I'm not shy about asking for help anymore. It's just Randy and I, and he can't be there for everything, so if they offer, I'm taking it, combind with a lot of gratitude for their kindness.
So I asked for a list of People that Can Give me Rides, whether that is to drop me off for chemo, and pick me back up, or taking me to a doctor appointment, or Gilda's Club, or whatever. How nice it will be to have this list!
The next list is People that have an hour to spare that could come over and move a couple loads of laundry, or dust, or other small projects that add up. Just knowing that some of these things are not piling up waiting for me to feel better is a great relief.
Next is People that can be on call for when Randy is out of town on business, or out for the day. This is more of a "nice to know it's there" kind of list. But maybe there are a couple of folks that don't have kids or other commitments that may be willing to be on call for whatever thing I may need.
Another one is People that would make a meal. I would not use this much, but I'm thinking about the rough days when Randy could use a break and I won't be feeling good enough to cook. Just knowing that a meal is in the freezer or was dropped off will provide comfort for both of us. I thought I'd start by having that done on chemo day. It's only every 3 weeks, but would be such a comfort to both of us.
So you get the idea. How amazing is it that there is a group of women from church that are willing to do this. Even more amazing for me is that it's available for me. I know so many who have no one. I used to be on these kinds of lists for people, and am glad I did. I'm not ashamed to ask for help if the helpers are there and willing. It's a blessing. A rare one.
So I'm off. The new oxygen supplier technician is coming out today to test me for on-demand oxygen. I think that would work better. I'm going through the little portables so fast, and I'm not even going out that much. I'm going to ask her about liquid oxygen, and refillable oxygen tanks as well. Now that I've been on it for a while, I know what questions to ask. I'm looking forward to this.
Next is pulmonary rehab. I have the packet of information, but haven't gone through it. I need to do that. I thought I'd wait until chemo is over, but they are trying to tell me to do it during chemo, that it will help a lot. I trust that is true, so I'll get on it today.
Ok, have a good day. It's another ridiculously sunny day. Supposed to get to 60!!!!! Yesterday the sun got so warm that I actually had to open a couple of windows! It was awesome.
MI Judy
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I found him when I searched for Joe B. This is an article that was written about him in 2009. What a remarkable man. viewtopic.php?f=50&t=41567&p=390309#p390309
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Tuesdays Air
in JUST FOR FUN
Posted
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