Thursday and January is ending

Wow can it really be January 31st? We have been gone for 2 full weeks now. It just doesn't seem possible. Things have settled into somewaht of a routine here. Steve works almost all of the time and I try to stay busy. It is not vacation for either of us rather it is living and working in a nice locale other than home. Not that I am not enjoying myself because I am, but I do miss home too. Or maybe I miss Steve being around while I am in such a nice resort situation. I have met some nice ladies and have been included in tennis games almost everyday. I have enjoyed spending time with my Mom and Dad too. I got to watch my Dad in a league shuffleboard match yesterday. There is a lot more to the game then I always thought. It was fun to see so many seniors competing so intensely. I did not get to stay until the end but Dad's team was ahead when I left.

I talked to John yesterday too. He was back in Perrysburg after seeing the oncologist in Columbus. His blood counts were ok, a little rise in one of the cancer markers but not enough to worry the doc. He has a couple of weeks off now and hopefully will start to feel a little better again. Tireness has been a problem as well as some side effect issues with the chemo meds. He sounded good though and seems to be enjoying being at the house.

I also talked with Mike and there is no news on the job front. He is struggling with eating well while we are gone. I need to work with him on that more if he ever hopes to live on his own. He is not a sweet eater but loves ice cream and popcorn and pizza. When we have been gone before I knew his diet was not healthy but always figured that a week of pizza, popcorn and ice cream wouldn't kill him. But now I am worried that a month of that type of diet has real negative implications. Being home, not working doesn't help although he tells me he has been going down to the treadmill and walking regularly.

I have just finished a tennis cardio clinic and I am headed to the beach cabanas now with yet another good book and my camera. I do love just sitting down by the ocean and listening to the waves. It is real Florida weather today.

"He who knows all the answers has not yet been asked all the questions."
anonymous

Some pictures of Florida

I spent some time on the beach reading yesterday and brought the camera along to snap some pictures. Obviously you can see the birds were more plentiful than other beachcombers. The temperature was in the mid 60's but the wind was blowing enough to keep it feeling cool. The cabana blocked a little of the wind and it was fine for reading with shorts and a sweater on. Today it is suppose to get warm and the wind should die down.




Oops this isn't Florida. I got this picture of AJ from Jesi yesterday. He helped shovel the driveway in Perrysburg and had fun in the backyard in the snow.

Another week in Paradise

So it is time for MMEMFM (monday morning e-mail from mom). The weekend here was very nice other than a little rain on Saturday night. I actually sat on the beach Saturday and watched all of the beach walkers while I read yet another novel. Longboat Key Club has all of the great little cabanas so you can stay out of the sun and wind. Steve worked all day Saturday but we went out for a great dinner, just the two of us Saturday night. Sunday Steve had meetings at 3PM so we had the greater part of the day to enjoy together. We walked into St. Armands Circle because there was a big outdoor Artists Show. It was fun to see some of the art. Everything from really expensive sculptures to some more reasonable prints and jewelry. A very relaxing day.

John finished the Temador on Saturday without much trouble. He will be going to Columbus this week for a doctors appointment and scans and bloodwork but I doubt they will know much about the effectiveness of the temodar yet. I am not real sure why they are seeing the doc, I think it may be just a regular checkup.

I am off to a tennis game today and then a walk on the beach with Steve later this afternoon if they finish early. He tells me he will be "home" for dinner tonight but that I can plan on BINGO with Mom on Tuesday.

I read an email from a good friend named Hope today before writing the blog, so when I saw this quote I knew it was meant for today.

He who has hope has everything.
- Arabian Proverb

End of the week update

I haven't gotten back to the pictures yet, but thanks to everyone that sent your email address to me. I have stayed busy playing tennis and walking the beach. No swimming yet as the temperature has been a little chilly.

John seems to be doing OK with the Temodar. He said he has not had any nausea but his back has been painful again. Sleep is an issue too, although one night this week he said he slept the best he had in weeks. So go figure.

No job for Mike this week but we have our fingers crossed that something is going to happen soon.

Steve has been working many hours here. It certainly isn't a vacation for him. Hopefully Sunday there will be no meetings and we can enjoy Florida weather together.

Everyone have a good weekend.

"I haven't failed, I've found 10,000 ways that don't work."
--Ben Franklin

E-mails needed

Semi-geek that I am turning into I failed in one important aspect of e-mailing from my new laptop. I did not download my address book into the remote mail server so I don't have many e-mail addresses. Today as I am working on digitalizing slides from 1987 I wanted to send some copies of some of the pictures to people, but I can't because I don't have addresses. I want everyone to laugh with me as I look back in time, but I know that some of you will have no idea of who is who. So for today I will post only one with general interest and hope you all send me an email so I can send you more as I encounter them. I love it when you comment but this time send me an email. I guarantee I will find a picture to send to you that will make you laugh. And if I find a really good one and I don't have your email I will just have to post it here for everyone.

This first one I wanted to forward is before "The Guys" 20th reunion. The Orosz's and the Moore's stayed with us and I think John Black just came over before the dinner. What a good looking group we were. "The Guys" are Steve's friends from grade school and high school. This wonderful group (there are more not pictured) has remained friends and we have gotten together for school reunions and major birthdays. We are now celebrating kids weddings, grandchildren, and planning for another major birthday trip sometime in 2009.















I have been amazed at the distance this blog has spread in the last 2 months. I really can feel the support and we are grateful for all the prayers for John and his family. I will continue to post updates as I get them and please do feel free to post comments but send me an email when you read this now so I will have an easy way to get my address book into the laptop.

Staying busy

I talked to home today and John, Jesi, and AJ are settled into the Perrysburg Stanford household with Mike. John had his blood levels checked Monday before they left Marysville and the platelets were up to 170, well over what is needed for the temodar (chemotherapy). Temodar is a pill form of chemo that has proven successful in treating brain tumors because it crosses the blood brain barrier better than many other chemos. We are hoping it has some effect on the heart tumor too. If not John will have to go back to the other combination he was getting in addition to the temodar. The beauty of this right now is that it can be done in Perrysburg as opposed to Columbus. It will be interesting to see how long nurse Mike waits on John. Probably only as long as John loses to him in Nintendo. I am happy they can be staying in our house while we are gone and hopefully their Marysville house will sell.

No jobs for Mike yet. One possibility last week was in Bowling Green working at the courthouse but it disappeared when they found out transportation wouldn’t be available. Mike could work in BG without transportation but it would involve moving there so he could drive himself. He is reluctant to leave Perrysburg and we feel there are probably opportunities that will work for him in town.

Now for the Florida update. Steve is working hard and I am playing hard. I have finished one book, played tennis, and been to the fitness center twice. I have also walked the beach and worked on my digital photo albums. I am beyond relaxed and now will have to work to keep from getting bored. Tonight Steve is working so I am having dinner with mom and dad and then going to BINGO with mom. Mom is a very lucky BINGO player so I will probably just be glad to be with a winner. The weather here is fantastic. It is so hard to believe that it can be so cold in other parts of the country when it is sunny and warm here. I can understand why people want to come here for the wintry months.

View of Sarasota

We arrived at the Longboat Key Club this afternoon, unpacked and settled in. This is a picture from the balcony of our room for the next few weeks. It is looking toward the city of Sarasota. I hope to spend some time with this view reading and working on my digital photo albums. The weather is cool today but the sunshine was plentiful making it comfortable to we northerners. I hope to walk the beach tomorrow and check in with the tennis program. It really feels like a different world here to me. I have talked to Mike and of course I am always thinking of John but I am enjoying being away. I will continue to take one day at a time and stay flexible with all of my plans. Basically I am working on a 24 hour agenda and tomorrow that means beach,tennis, and working out. Just taking care of Linda.

Think about this one?
"A person who can't bend himself, can never get up after falling down."

Florida Sunshine

Steve and I arrived in the state of Florida sometime around noon on Friday and although we have not seen much sunshine yet the temperatures are very nice compared to those in Ohio right now. It was great not to have to get into the car again today and instead enjoyed a nice long walk. We also went to shuffleboard with Dad this afternoon and had a swim with both mom and dad. All in all a very relaxing day. Tomorrow starts the reason for the trip as Steve will have to work after we check into the hotel.

Good news from John today. The platelet count was up to 75 on Friday so even though that is not high enough to start the new chemo pill, the count is returning to a normal level. John is getting it checked again on Monday and hopefully will be able to start the chemo then.

Mike seems to be enjoying his bachelor status at home this weekend. His cooking skills will be given a good test. I am sure by the time John and Jesi get there he will be happy for the company.

Today's words to ponder.
No act of kindness, no matter how small is ever wasted.

TLC in Atlanta

Good morning from the Smith Resort in Marietta GA. We had the best evening a traveller could have on the way to Florida. Got to Tom and Julie's house around cocktail time and after both dart and pool competitions had a delicious meal prepared by the loving hands of Tom and Julie. I want Tom's marinade recipe for flank steaks. When I get it I will publish it here for everyone to enjoy. One evening is certainly not enough time to cover all the details of 2 families lives but what fun hearing about kids and jobs and of course grandbabies. We also threw out some thoughts for "the Guys" upcoming major birthday. It is so much fun to see Tom and Steve together. The years were erased and both of them could have been high school seniors last night laughing and competing around the pool table and dart board. Time stood still for a moment while we were held close by such good friends. Today as we proceed down I-75 toward my mom and dad's house in Florida we leave behind in Georgia, friends that are as dear as family.

Now about the red wine headache this morning... I am off to the aspirin bottle and I will remember to be a little more cautious in the consumption of this wonderful beverage.

Today's anonymous thought.
As I grow to understand life less and less,
I learn to love it more and more.

Well I think I am ready...

but I am sure there will be something forgotten too. Spent today cleaning up details with Mike. Food in the house, bills paid, packed, organized for John and Jesi and cleaned. Exercise was at the top of the list today but I think going at the pace I was at today it is okay that it got skipped. Of course there won't be much exercise the next two days sitting in a car either. Haven't heard from John yet today on how the blood levels are and if he will start the temador tonight or not. I will try to post when I know.

We are off early tomorrow so the next post will be from my new laptop on the road.

Here's a gem from Winston Churchill.
"Never, never, never give up."

Don't sweat the small stuff

Those of you that know me know that I am a list and agenda person. So I have been working items off my lists of things to do before Florida. Neatly scratching off accomplishments and seeing the list grow smaller. But then...those irritating everyday normal problems sneak in to totally disrupt the flow. My cell phone battery was performing poorly and I knew it would have to be addressed soon but yesterday I got 2 short calls on a fresh recharge and the battery was dead. Not something that can be dealt with while travelling. So I added a trip to the verizon store to check the options on new phones and batteries. Of course we are 3 months short of the new every 2 program but I did get a new battery. Then last night as I am getting the dishwasher soap from under the kitchen sink I notice it is all wet. I tracked the problem down to the spray hose nozzle. So off to Home Depot at 8pm last night to buy a new one. Problem fixed. Agenda reorganized. Can I add those two things to my list now so I can scratch them off? It looks like I have accomplished so much more that way.

Todays list is ready. I am laughing at yesterdays little problems. They really are little in the scheme of life and I am sure something will pop up today and tomorrow that I am not aanticipating. There will probably be things that don't get done too. It isn't going to bother me. I am working toward chilling for awhile.

Which brings me to today's thought. It's a good one by Charles Spurgeon an English preacher from the 1800's.

Life is made up of many changes; and no state, be it bright or clouded, will always continue.

Today, Tomorrow and Wednesday

That's what I have to get this trip to Florida together. Let's see during those three days I would also like to find Mike a job and get John feeling better. Not too big of a task is it? Actually Steve and I worked well together this weekend and got most of the stuff around the house ready for John and Jesi to move in. I tried to do a little child proofing and get things a little more organized. Fortunately Mike is good in the kitchen and can find most things around the house. Also we took care of details like deliveries and papers. I have list of garbage days, neighbors and friends to call on for help, and what is left over in the freezer. I still have not attacked the clothes issue. The suitcase is lying on the floor in the bedroom but it is empty. Hmmmm.... No we will have clothes on when you see us. I think this afternoon I will start with what Steve will need for work clothes and then try to move into what we will need the rest of the time. I am planning some sweaters and jackets because last time we were there in January we suffered some pretty low temperatures for a week. We did start the shoe wardrobe last night. Lets see there are golf shoes and tennis shoes and running shoes and walking shoes and sandals and work shoes and dress up shoes. That should cover almost all of the activities we may get involved in. I am usually a very conservative packer but I think this time I am going for, if we might need it, pack it. Of course I also like the philosophy of "if you didn't bring it and you need it, buy it" .

Talked to John yesterday and he had just finished an MRI of his spine. The doctor thought on Wednesday that if the melanoma was in the spine it could be causing some of the back pain. We will know results later this week, not that it will change anything though. Last week after the appointments John got 2 units of blood on Thursday. His platelets were at 17 and they need to be at 100 to start the temador pill. So they decided to bring him back on Friday and give him another unit of whole blood and a unit of platelets. Hopefully that, in addition to the recovery time from the chemo will get him up to the level necessary to start the temador on Wednesday. That is the target date. Seems the insurance covered the temador without an appeal. That is good news too. Let's hope this is the magic pill.

I have seen lots of friends over the past few days and everyone without fail has offered help to John and Jesi and Mike while we are gone. And they have all told me get away, take some time off, try not to worry. I am so thankful to have such wonderful people around me that are so caring. If you think I am holding up well it is only because you are all there supporting me. I am going to spend some Linda and Steve time in Florida too. I am sure I have failed to tell Steve how important he is to me in getting us though this difficult time. I am very lucky to have such a wonderful husband.

Todays thought is from Confucius. It is a thought to ponder.
"It does not matter how slowly you go so long as you do not stop."

TGIF

I am always glad to see Friday roll around. My favorite tennis group has been playing on Friday morning since forever ago and it is so nice to get out and whack away at the tennis ball without thinking about anything else for an hour and a half. It is great to have friends that understand my sometimes less than composed mood when they ask me whats new and I start crying. It has been an emotional week but I think we are all comfortable with the new plan and that helps to keep the mind focused on hope. The hardest times are between therapies because there is nothing to focus on except the fact that the last plan didn't work.

I am beginning to look forward to Florida to recharge the physical and mental Linda. I have always loved the adventure of a road trip with Steve and next week will be no exception. We have the advantage of spending time with friends and family along the way which will add to the enjoyment this year. Having such good communication tools at hand will ease my mind that we are in constant contact if necessary. It is hard to imagine how people used to be out of contact for long periods while vacationing. Surely emergencies happen and they were contacted but it must have been much harder to leave home during periods of uncertainty.

Todays chuckle:
Smart is when you believe only half of what you hear. Brilliant is when you know which half to believe.

Have a great weekend!

The roller coaster dips and rises (long post)

You have often heard me make the comparison of melanoma's journey to that of a roller coaster ride. There do not seem to be any long straight stretches, just peaks and valleys. This week started with the post holiday funk and the after chemo lows. Tuesday sent us further down the hill when the brain surgeon noted 19 more spots on the brain. Standard of treatment for this is whole brain radiation. Three to five times a week for 5- 6 weeks. Couple that with some pretty ugly potential long term side effects and John is saying "No way". OK. I spent last night researching and cybering with other melanoma patients and by this morning we had some options to hit the oncologist with that did not include WBR. A newer drug called temador is a pill form of chemo that is starting to be used for melanoma brain tumors. It is approved for other brain cancers but not melanoma. However it has shown success in treating melanoma and in most cases the insurance will cover it after an appeal is made. It has relatively few side effects and is taken at home. No hospital, not even in-patient. At the appointment today the doc walked in and suggested temador with the ciplatin and vinblastin that John has been getting. The heart tumor has responded to the vinblastin, cisplatin combo and she wants to continue those. But John is so tired and beaten down from the drugs he wants to stop for a month and see what happens. We talk about some other options and all finally agree that the best case scenario for John right now is to do the temodar alone. It should be very doable without the fatigue of the combo chemo. He will get his blood checked every 2 weeks and if the LDL marker starts to rise he will get right back on the combo chemo. We left the hospital all feeling like we had a good plan in place for the next month. Hope now is that the insurance will cover the drug and that John will not have any adverse reaction to it. Then pray that it works to kill the brain tumors. John's blood levels continue to be low due to the chemo so he will be getting transfused tomorrow. His platelets are too low to start the temador too. Hopefully by next week when this should start, all the numbers will be ok. John looked good today and his mood was upbeat. It was a good appointment for Steve and I to attend with John. I think he likes the added challengers to the doctors. We were able to quiz her about some other options that I have researched and she agreed there are some other options to work on when we see where this round goes. She seems to be in the fight again too and we were worried in September that she may have been ready to give up. The response of the heart tumor has kind of turned her around I think.

So that is the bad news, good news. John and Jesi are looking forward to spending the end of Jan and beginning of Feb here in Perrysburg while Steve and I are in Florida. Hopefully they will have to make only one trip to Columbus for medical care and the rest can be handled here. Their house will stay clean and ready for showing and they will be looking at permanent options here. A teaching job for Jesi and probably an apartment. It will be nice for them to have more family and friends in the immediate vicinity.

Faith and hope can be wonderful for the soul, but I know the roller coaster ride continues.

Maybe next year in Miami

So the Buckeyes came up short again. It was a better finish than last year and if we remember that preseason they were expected to finish the big ten conference behind Michigan and Penn State it puts a little perspective into a loss in the BCS championship game. So now we wait for March Madness and see if my Spartans can live up to their preseason rankings.

A record high of 66 degrees was achieved yesterday and today as I write this I see a golfer walking up the 18th fairway. Winter is set to return later this week according to the weatherman.

Today's thought.
Do not pray for a lighter pack; simply ask for a stronger back.

Have a great day!

Go Bucks! Ohio State Bucks that is.

Sorry about your Tampa Bay Bucs, Dad, but you have another chance today to say GO BUCKS! Both Steve and I are losers in the bowl pool, too many close games and upsets. Tonight we will hope for a national championship or at least not a repeat of the game last year. It was good to see Michigan beat up on Florida. (sorry Rosemary). The big ten conference still looks a little weak but tonight's performance will impact the overall conclusions.

No news on the job front for Mike although there were a few possibilities in the Sunday paper that we will pursue this week. He also has a few interviews on Friday in Bowling Green.

Look for news on John later this week. Seems like it was a quiet weekend in Marysville. They have talked to the Realtor and should be listing the house soon. I know Jesi has been trying to stage the house so it will show well. The plan is that John, Jesi and AJ will stay here in Perrysburg with Mike, while Steve is working in Florida. That should make it easier to schedule showings without having to worry about how John feels or having to constantly pickup after a toddler. I am still waffling on how much time I will spend in Florida until after this weeks doctors appointments. As it stands now I am planning on the road trip down with Steve and then we will play it by ear. Thankfully there are several flights between the Tampa/Sarasota area and the Detroit/Toledo area.

The weather in Perrysburg today is unseasonably warm. I will be outside walking my pounds off today for a change and hoping to catch a glimpse of sunshine.

Thought for today!
The new year lies before you like a spotless track of snow.Be careful how you tread it, for every mark will show.

Yea! It's Friday

Yesterday was OK. John spent most of the day of the couch while AJ and I played with some of his new Christmas toys. Overall John is tired and in some pain. The doctor has prescribed an additional pain med and he will get his blood levels checked next week. After the chemo the blood levels often fall and add to the tired feelings. Add the gray Ohio winter to that and you have the perfect setting for a depressed mood.

It will be good to get on with a normal schedule again after the December holidays and extra days off. Routine is good for everyone. Mike was out looking for new jobs yesterday and hopefully something will happen in that arena soon. I didn't mind him around for Christmas because it was such a busy time but now he needs to be up and working. He is too quickly enjoying sitting around all day watching TV. I guess I will have to update my chores list. I will put him on the "get more organized" resolution.

It was great to have Jessica around for a week during Christmas but the time passed much too quickly and we weren't able to spend much mother daughter time together. She worked hard to bond with AJ and was very successful. He was sad to see her leave, giving her big hugs and kisses. She is back at her desk at Fox this week and already planning more vacations.

So that is the wrap for this week. Keep the good vibes, and prayers coming in. It certainly helps to know there are others interested and involved. I thank you all for that.

January 2

The holidays are over and I should be looking forward to spending some time with Steve while he is handling a negotiation in Florida. I talked to John today though and he was having a down day. He finished the chemo regimen on Monday and is feeling tired and having a great deal of pain from the back tumor. He has an appointment next week with the gamma knife Doc about the brain tumors and he wants to know what happens if he decides not to have the treatment. Steve and I have decided to go with John next week to the oncologist appointment and try to press her to see if there are any other options we can pursue. If we are nearing the end of the road on treatment options we all need to hear that together to better decide how to proceed. Such hard decisions and yet they are John's decisions. We can only make sure he has all the facts and then support what ever he chooses. It is so hard as a mom to see your child suffer and not be able to fix it. I continue to research on the internet but there just seems to be so little success with melanoma. I guess I am having a down day too. I hope writing it down gets it out of my system. I am spending tomorrow with John as Jesi has a doctor appointment of her own. Send me some strength. I am needing it today and tomorrow. I still will remain optimistic that there is a sustainable remission possible but...

Happy New Year 2008

I have been slow to post thinking through the events of 2007 and the prospects of 2008. And even as I write this it is hard to do more than just live in the moment. Christmas was good this year because we just enjoyed it. There wasn't the usual reminiscing and projecting about the future. So I guess even though New Years Day is traditionally a day of projecting and resolving I am just going to enjoy it minute by minute. That is not to say I have not mentally made the usual list of resolutions this year because I have. I will be exercising more regularly and eating better and I will get some of my accumulated "stuff" more organized but I will also take time to smell the roses. I will make an effort to spent time with friends and family and not stress out if things get left undone because of it. I have never been up for housekeeper of the year award anyway so what is one more year of waiting.

OK , thinking too far into the future already. Lets think football! Today we root for the Big Ten Conference. I will watch the Rose Parade because that is on my list of things to see in person someday. HGTV is a great channel to watch the parade on because they really talk about the construction of the floats. They point out what is used for the different textures and colors. Since Steve has said the next time Ohio State goes to the Rose Bowl we will go I am looking forward to seeing it live soon. Thought we might be there this year but I guess having Ohio State in the Championship game isn't so bad either.

The year 2007 is over. We got through it and whatever 2008 brings we will handle with the help of our family and friends. Thank you, thank you! May you and yours be safe and healthy as we head into this new year.