Tuesdays Air

[Joppette]

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

[Joppette]

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

[Joppette]

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

[ginnyde]

I am going to stop your run Judy, hehe.

Glad the arm is on the right road. I admire your attitude about the rotten journey that you are on right now, but keep in mind that you will reach your destination and your life will return to a new normal. Many people are routing you on.

I love global warming, more golf, lower heating bills. What's to complain about.

I hope Judy KW begins to feel better.

[lilystemp]

Hi Judy and Ginny. Judy I don't always post but I try to follow all of you on here each day. Even if you don't see me I am here cheering you on as you say everyday. Also Judy KW and so many others, some who post now and then and some that I keep wondering where they are and how they are doing.

My days just fly by so fast that I am always at a loss for time to do the things that I have planned. I have been sticking to my exercise program and feel that has helped me to get stronger and I have even lost a few,very few, pounds so far. By the time I do at least 45 minutes of exercise and then walk for a half hour or so most of the morning is gone. I am still envolved in a lot of things here where I live.

I don't quite know how but I seem to aquire new jobs and responsibilites all the time. I started out volunteering for everything then backed off. Now I seem to get volunteered and have those jobs added before I know what happened. I am now the President of our resident council then the treasurer moved so I have the safe to take care of. That comes in handy sense I do the shopping for supplies for our recreation room and for any special occasion. Not to mention cooking and overseeing most activities. Don't get me wrong, I enjoy doing those things but added to my exercise they seem to have taken over all of my time. My sewing and the writing I have been trying to do have suffered dearly.

Our weather here is backwards to all of yours. We had Spring the whole month of February while I was sick and then the first two weeks of March. Now we are getting our rain and cold just when I am getting the itch to go for a long walk outside instead of doing the stairs inside.

We had a good St.Patricks Day. I had some games lined up and after the games we had a pot luck. That is the first time I have gotten an activity to last more than an hour and a half. I did that by withholding food until after game time. We had a few straglers, the ones that never bring anything and always come and load up on food and leave. Myself and another lady let them know that we are not in the business of feeding everyone but providing activities for all.. Those same people never bring a dish and you only see them when there is free food. They load up on the leftovers and you don't see them again until the next time. I have found a way to overcome that I think. Will let you know if it works next time.

Sunday I spent the day cooking and talking to my kids. I had a lot of chicken in my freezer and decided to cook it all before it got old and freezer burned. I pot fried some in onions and garlic and ate some of it over rice. The rest I boiled and took off the bone. I made chicken salad with part of it and put the rest in the freezer. I ended up wtih a nice size bowl of chicken stock after I cooked the bones and some veggies down I can use some of that to make a chicken pot pie latter. The left over from my lunch I cut up and mixed the onions and garlic and just a little rice with. I then added some cumin and chili powder and yesterday I spread it on tortillas and sprinkled some weight watchers cheese on it and took it to share with a couple of friends for lunch along wtth the chicken salad, Weight Watchers recipe. It was really good like that.

We sat and talked for a long time. Karleen is younger than me and Mary and we started talking about how things were when we were young and how different they are today. I ended up sharing some stories about my parents and brothers and so did Mary It got very emotional. When I came home I decided it is time that I write about those things so my kids and grandchildren will some day have a picture of family that they never got a chance to know. I just want to write about all of those little things that pop into my head. It makes people more real, I only wish I could have something like that to read about some of my ancestors or even some about my parents.

I ended up posting some old pictures on my ancestry site then added the updates that I had been putting off. I had to put the deaths of both my sister in law Sherrell who died last January and her daughter my niece Jackie who passed this past November. That was very hard and then I added the good part. I put our newest family member little McKenna on there.

So my day turned out different than I thought and when I added some old country music to the background I had a lot of good memories but boy did the tears flow for a big part of the day.

So here I am writing a book again. Sorry to take up so much of your time but looks like th air has been slow for a while. Please take care everyone and know that you are all in my thoughts and prayers.

[eric byrne]

Good Evening Everyone,

Beautiful day here today,though not the 80 degrees JudyMI mentions currently in Michigan.I am so envious.

Well besides my usual exercise regime over the last week, I attended a SIGN sponsored conference on Thursday last, under the heading Healthcare Improvement Scotland in the Beardmore Hotel within the Golden Jubilee Hospital building.This hospital,was built by a private health insurance company to cater for the middle eastern countries,in attracting oil rich clients for medical care,so the story goes,it was never viable and was taken over by the UKs NHS.Incidentally,it was where I had my LC op.I joined one workshop which topically was about writing medical guidelines,although the topic was about abdominal aeortic aenurisms (apologies about the spelling).By good fortune, my fellow layperson on the committee for the redrafting of the document The management of patients with lung cancer,was there.George and I have been tasked to produce a document about what information should be given to a newly dxd lung cancer patient,we have been provided with examples of such a document which relates to other types of cancers,George and I have agreed to collaborate in its production,its due to be handed in by the end of May.On leaving the conference late afternoon,I returned to the car park,to pick up my car,its not where I left it,thinking perhaps my recall was flawed I walked all the ranks of parked cars for about half an hour,to no avail,the cars gone.I returned to the hotels reception desk to report my loss,and to phone the police,the receptionist thinks for a moment,and asks,”Did I enter the Hospital side of the complex or the Hotel side,sheepishly I enquire “You mean there’s two car parks?you’ve guessed it, I exit the other side of the building and sure enough my car is there where I had left it.

Saturday,I attended my BIL’s 60th birthday party in the Cafe Asia function suite,it was a great night,food, music and company,one fly in the ointment, no White and Mackays on the gantry,I had to settle for the malts of Glenfiddoch and Glenmorangie,well somebody has got to do it.Mid way through the evening Pat was called to the floor by the DJ to receive a wee prezzie, which he described for Pat as a “Dancing Aid”,when Pat arrived the DJ presented him with a full size inflatable zimmer.The kids had great fun playing with it for the rest of the evening.Pat was pleased with my gift of a seaplane flight up the west coast of Scotland and dinner in a restaurant on the shore of Loch Lomond.Another prezzie he received from the family was a day out at Inglestone race track,thinks Randy would like this one,he gets to drive a Porche? and a Lambourgine around the track,I will be going with him to get some pics of the action.

Gosh so much going on with all of you over this last week,JudyMI,sorry to hear of your continual medical probs,I really seem to have been lucky with my experience of cisplatin and vinorelbine in that I never had any appreciable side effects of tinnitus,nausea or muscle ache,I do hope you will be over these effects, soon as.I have to compliment you on your resilience and stoicism in the face of such adversity since your op,an example to us all here,methinks.

JudyKW,another soldier still fighting with hospitals and doctors,I really do wish you can have a break(permanent) from all of this,best wishes for your next procedure on Wed.Did you get booked up foe WashingtonDC? I am so looking forward to meeting you at last and the all many others that frequent our boards.

Hi Janet,Thank you for the link to Ray of Light,it looks a super place to spend time,I so envy you working there,you are so right being with children and animals brings a smile.Best wishes for your CT and MRI scans,gosh its like we all in a episode of Dr Kildare,perhaps you are all too young to remember that prog?LOL.

Hi Bud,Thanks for sharing the wedding pics of your lovely family.How did your 200k cycle event go?

Sorry got to go everyone,ok who said at last?,its indoor bowling time,I really must post a bit more often,sorry if I did’nt mention some of you,its not deliberate as much as giving everyone a break from me.Bye for now.

[Bud Baker]

Good evening, everyone!

We survived the storms here, though every porta-potty stop on today's bike ride had to be bypassed because they had all blown over.

Rose and I did 26 miles on the tandem today. It will likely be our last ride on that bike. I'm headed to Oklahoma City tomorrow to pick up a nicer tandem. It's a RANS Screamer.

Eric, the 200k was great, but I was a seriously tired camper afterward. The only two other riders who showed up were both strong riders, we started out with too fast a pace for me against a howling headwind, I burned too many matches early, and by the end of the ride I was just turning the pedals and trying to keep moving.

I finished the 127.8 miles in 8:40, a good 200k time for me. At my winter weight and in my winter shape, that's too fast for me, and I was feeling it for a few days.

Have a great evening, all!