A Prayer Request For Jim

[funnylegs4]

Hi Rose,
Yes I have private social media accounts and this Google Plus page for the films https://plus.google.com/u/0/103662816758572885430 So we are both thinking the same thing. Thank you! This time I'm working on more of a deadline so hoping things happen a bit more quickly than with the previous films!!!

Yes India used to be a British colony. I have a film fan in India who told me many people in India read and speak english because of their British past, which is why these fans could understand my films. Indian food will not do Jim any harm unless the Chemo is upsetting his stomach. The Indian spices like Turmeric would have fantastic benefit. I can't stand for more than an hour either. You would be amazed at the things one can cook while sitting. I'm a big fan of quinoa. If you flavor it more like rice he might get a taste for it i.e adjust spices. There's also something called "Forbidden Rice" that that has Acai in the rice itself and that stuff is FABULOUS! Acai is a superfood antioxidant. The cancer will hate Acai. It would work wonders for Jim as a way to get a superfood! Look for that!

How nice that Jim gets to eat whatever he wants! You are awesome! Prayers coming!

[mg12061]

Rose, thank you for all your updates. Sounds like you're running a cafe. It sure sounds like you're doing everything possible to help Jim to stay healthy. Some things Kathleen loves to eat are Avocados, sweet potatoes oatmeal (we put almond butter in it with fruit). We put broccoli slaw chopped up in a lot of things like egg salad and potato salad. We also add avocado to a these things too. Instead of bread she scoops egg salad with black bean chips. I have an electric egg cooker and it works amazing for hard boiled eggs. She will eat ust about anything I put into whole grain rice. She loves omelets too and will eat almost anything I put in them. Instead of dipping things in salad dressing(she loves to dip) I make a dip with plain yogurt and a small amount of mayo and some spices. I've also added avocado to this. I make her fries fresh from either white potatos or sweet. Just a couple of ideas....

An update on Kathleen... On Saturday she will turn 20!!! I can't even believe it. Of course she is sooooo excited. For the first time her surprise party will actually be on her birthday. We are doing a Mexican Fiesta this year. She wanted her party at my sister's house this year so that's where it will be. She's been very healthy all winter except for a cold/flu which didn't last too long. I will post up some pictures after her party. The weather here has been really unusually warm so over her winter break we got out for walks and bike rides a lot.
As always my prayers are with your family. You have been so busy I hope you are keeping yourself healthy too...
Mary Grace

[Earth Mother 2 Angels]

((((((Hugs to All))))))

funnylegs4 ~

Thank you for your suggestions. I've tried to disguise quinoa with sauces, spices, veggies. He knows it's quinoa. He doesn't like it.

When he started the flax seed oil with cottage cheese, he wasn't enthusiastic about it. He doesn't like cottage cheese. So, we switched to yogurt with the flax seed oil, and he's content.

I've read articles recently that tumeric is overrated. It's hard to know what to believe any more.

You live in a locale, which is crawling with actors and artists (I gathered from your site and the location of your upcoming film). Perhaps there are acting schools/classes, and theater programs at nearby colleges/universities, where you could post a flyer (the old fashioned form of communication) to attract actors, who want experience and footage to add to their resumes. Or contact the heads of the theater departments and ask for referrals, offer to speak to classes as a guest, market yourself and your films. How about local CP programs, or programs for people with disabilities? Reach out to them for actors, grips, whatever you need. Or you might create a YouTube video with clips from your previous films interspersed with your concept for "Stroke of Endurance."

I'm just brainstorming here. In my previous life, when I couldn't find a teaching position, I had to work in the private sector. I was a marketing manager for a major corporation. I completed all of my coursework and 95% of my thesis for my Masters in Marketing Management. So, that part of me is trying to think of ways for you to cultivate the talent you need for this project.

Wishing you the best in this endeavor ~

Mary ~

The dips you are making for Kathleen reminded me of one of our favorite dips (we love Greek food), Tzatziki Dip or Sauce:

https://www.google.com/search?q=tzat...utf-8&oe=utf-8

I add Extra Virgin Olive oil, use dried dill weed, and add parsley.

And here are some gluten free falafel recipes to go with that dip:

https://www.google.com/search?q=tzat...free+falafel&*

HAPPY 20TH BIRTHDAY KATHLEEN!

Time sure flies! So happy to hear that Kathleen has been healthy and happy. May it always continue to be so.

A Mexican Fiesta sounds right up my alley! Will there be a pinata? A mariachi band? I know that there will be lots of guacamole! Have a wonderful celebration!

OUR UPDATE

Yesterday, I shopped at our favorite organic grocery, which is small and awkward to maneuver. Most shoppers just buy a few items in a carry all basket. I fill two of their largest push carts! It's a 20 minute drive to/from, plus an hour in the store or more on my feet, lifting the bags into our van, unloading the bags at home, and putting all of it away. It wears me out. I'm not a young woman, you know, and I have RA, which has been active, of course, during this stressful time with Jim and Jon.

As the cashier was scanning all of my groceries, she asked me, "Did you just get back from vacation?"



Our last vacation was in 1993, when Jim and I took the boys to Laughlin, Nevada, then to Zion and Bryce Canyons in Utah. We had a 2 week vacation. But everywhere we stayed, we had to unload a feeder seat, diapers, luggage, food, meds, wheelchairs. We had a fantastic time, but it wasn't like a cruise or the French Riviera!

Jim and I haven't even been out to dinner by ourselves since 1997!

Vacation!?!? If she only knew.

I just chortled, "Ha!" And then I said, "No, I'm just stocking up so I don't have to come back here for another month."

That's the truth. Shopping here is strenuous, because nothing makes any sense. The flow of the store is weird. It's narrow and they are always stacking shelves with pallets in the middle of the aisle. Everything we want is on the bottom shelf, so it's a lot of stooping and bending for me.

I asked that the bags not be too heavy. I'm obviously not a young, fit woman. But no, every bag was heavy, some ridiculously heavy, where the bag broke, when I lifted it to carry it into the house.

Once I got all of that sorted out with Jim's help, we ate some soup and Bavarian Rye bread (he loves this bread) toasted. My first meal of the day.

Then our friend came over to help us turn Jon. So, I got to change Jon's sheet, and do all of the other care needs for him. More stooping/bending, and standing. I also gave Jon a full bath and shave. He's peeing over his catheter. We don't know why, but it's been going on for over a month now, even with his new cath, which his nurse placed on Tuesday (and changed his trache). We're probably looking at increasing his catheter size from 20 French to 22 French. After all of these years of indwelling catheterization, the need to go up a notch in the cath size is not unusual. I just wanted to stave it off a while longer.

Jim is eating very well. He's making such an effort to keep up his nutrition. And now that I've brought home more options, he's enthused about eating. I found some new Quorn options. He ate one today and really enjoyed it. He's also ready to drink his Orgain shakes. I bought 2 6 packs. No mixing. Packed with protein and nutrients.

He's resting quite a bit, but he's also trying to be more active, which is wonderful. When I said, "I need to bring in the trash bins," tonight, he replied, "I'll do it. I can do it. Just let me." So I did. And he was a tad bit winded, but he remarked that the sky was magnificent, and he was glad to contribute to the household chores.

Jon's nurse, who is an expert in infusion, PICC, Central Lines, and IVIG, checked Jim's port, when she visited. She said that it looks good, and that his discomfort is to be expected. At least we know that nothing abnormal is happening there. But it's this bulging thing under his skin, right under his clavicle, so, of course, that doesn't feel good.

We're both nervous and hopeful about Jim's impending Round 2 of Chemo. We are praying that the molecular lab identified the best chemo to target Jim's specific cancer to eradicate it. Our apprehension is whether he will tolerate the new drugs as well as he tolerated the first round drugs. It's all the unknown.

We are all together, here, and we take each day as if it is our first and last day. Every day needs to be filled with more love and more memories. We have to squeeze all of that in between the physical aspect of daily living, and we do.

Life is precious. Here, there and everywhere.

Thank you all so much for your prayers, love, support, encouragement, advice, and being wonderful YOU~

Love & Light,

Rose

[stillstANNding]

"Did you just get back from vacation?" Love it.

Thank you for the updates.
ANN

[funnylegs4]

This quote is hidden because you are ignoring this member. Show Quote

((((((Hugs to All))))))

funnylegs4 ~

Thank you for your suggestions. I've tried to disguise quinoa with sauces, spices, veggies. He knows it's quinoa. He doesn't like it.

When he started the flax seed oil with cottage cheese, he wasn't enthusiastic about it. He doesn't like cottage cheese. So, we switched to yogurt with the flax seed oil, and he's content.

I've read articles recently that tumeric is overrated. It's hard to know what to believe any more.

You live in a locale, which is crawling with actors and artists (I gathered from your site and the location of your upcoming film). Perhaps there are acting schools/classes, and theater programs at nearby colleges/universities, where you could post a flyer (the old fashioned form of communication) to attract actors, who want experience and footage to add to their resumes. Or contact the heads of the theater departments and ask for referrals, offer to speak to classes as a guest, market yourself and your films. How about local CP programs, or programs for people with disabilities? Reach out to them for actors, grips, whatever you need. Or you might create a YouTube video with clips from your previous films interspersed with your concept for "Stroke of Endurance."

I'm just brainstorming here. In my previous life, when I couldn't find a teaching position, I had to work in the private sector. I was a marketing manager for a major corporation. I completed all of my coursework and 95% of my thesis for my Masters in Marketing Management. So, that part of me is trying to think of ways for you to cultivate the talent you need for this project.

Wishing you the best in this endeavor ~

Mary ~

The dips you are making for Kathleen reminded me of one of our favorite dips (we love Greek food), Tzatziki Dip or Sauce:

https://www.google.com/search?q=tzat...utf-8&oe=utf-8

I add Extra Virgin Olive oil, use dried dill weed, and add parsley.

And here are some gluten free falafel recipes to go with that dip:

https://www.google.com/search?q=tzat...free+falafel&*

HAPPY 20TH BIRTHDAY KATHLEEN!

Time sure flies! So happy to hear that Kathleen has been healthy and happy. May it always continue to be so.

A Mexican Fiesta sounds right up my alley! Will there be a pinata? A mariachi band? I know that there will be lots of guacamole! Have a wonderful celebration!

OUR UPDATE

Yesterday, I shopped at our favorite organic grocery, which is small and awkward to maneuver. Most shoppers just buy a few items in a carry all basket. I fill two of their largest push carts! It's a 20 minute drive to/from, plus an hour in the store or more on my feet, lifting the bags into our van, unloading the bags at home, and putting all of it away. It wears me out. I'm not a young woman, you know, and I have RA, which has been active, of course, during this stressful time with Jim and Jon.

As the cashier was scanning all of my groceries, she asked me, "Did you just get back from vacation?"



Our last vacation was in 1993, when Jim and I took the boys to Laughlin, Nevada, then to Zion and Bryce Canyons in Utah. We had a 2 week vacation. But everywhere we stayed, we had to unload a feeder seat, diapers, luggage, food, meds, wheelchairs. We had a fantastic time, but it wasn't like a cruise or the French Riviera!

Jim and I haven't even been out to dinner by ourselves since 1997!

Vacation!?!? If she only knew.

I just chortled, "Ha!" And then I said, "No, I'm just stocking up so I don't have to come back here for another month."

That's the truth. Shopping here is strenuous, because nothing makes any sense. The flow of the store is weird. It's narrow and they are always stacking shelves with pallets in the middle of the aisle. Everything we want is on the bottom shelf, so it's a lot of stooping and bending for me.

I asked that the bags not be too heavy. I'm obviously not a young, fit woman. But no, every bag was heavy, some ridiculously heavy, where the bag broke, when I lifted it to carry it into the house.

Once I got all of that sorted out with Jim's help, we ate some soup and Bavarian Rye bread (he loves this bread) toasted. My first meal of the day.

Then our friend came over to help us turn Jon. So, I got to change Jon's sheet, and do all of the other care needs for him. More stooping/bending, and standing. I also gave Jon a full bath and shave. He's peeing over his catheter. We don't know why, but it's been going on for over a month now, even with his new cath, which his nurse placed on Tuesday (and changed his trache). We're probably looking at increasing his catheter size from 20 French to 22 French. After all of these years of indwelling catheterization, the need to go up a notch in the cath size is not unusual. I just wanted to stave it off a while longer.

Jim is eating very well. He's making such an effort to keep up his nutrition. And now that I've brought home more options, he's enthused about eating. I found some new Quorn options. He ate one today and really enjoyed it. He's also ready to drink his Orgain shakes. I bought 2 6 packs. No mixing. Packed with protein and nutrients.

He's resting quite a bit, but he's also trying to be more active, which is wonderful. When I said, "I need to bring in the trash bins," tonight, he replied, "I'll do it. I can do it. Just let me." So I did. And he was a tad bit winded, but he remarked that the sky was magnificent, and he was glad to contribute to the household chores.

Jon's nurse, who is an expert in infusion, PICC, Central Lines, and IVIG, checked Jim's port, when she visited. She said that it looks good, and that his discomfort is to be expected. At least we know that nothing abnormal is happening there. But it's this bulging thing under his skin, right under his clavicle, so, of course, that doesn't feel good.

We're both nervous and hopeful about Jim's impending Round 2 of Chemo. We are praying that the molecular lab identified the best chemo to target Jim's specific cancer to eradicate it. Our apprehension is whether he will tolerate the new drugs as well as he tolerated the first round drugs. It's all the unknown.

We are all together, here, and we take each day as if it is our first and last day. Every day needs to be filled with more love and more memories. We have to squeeze all of that in between the physical aspect of daily living, and we do.

Life is precious. Here, there and everywhere.

Thank you all so much for your prayers, love, support, encouragement, advice, and being wonderful YOU~

Love & Light,

Rose

You're welcome! Thank you so much for the update Rose! First of all excellent ideas! Thanks! We are on exactly the same page here. I had a speech yesterday. I have 2 more speaking engagements planned so far and may get a 3rd and have tapped into a ton of resources both disability and acting related. The trick is just to get people to respond,that takes a bit longer, as disabled actors do not grow on trees the last time I checked…wish they did! And there's no database or anything for disabled actors really, yet unfortunately but I am making slow and steady progress. I have built good networks so I just hope it happens fast enough. I'll post updates regularly whenever I can. If you have more suggestions I would love to hear them!!!

I'm glad you are letting Jim help with chores. It's good for him psychologically. I know from taking to people who have illnesses and disabilities later in life that they liked to be asked for help because they did not want to feel weak,helpless, or useless. They needed to feel needed.

I pray the new drugs have no side effects and Jim builds his strength!

[Earth Mother 2 Angels]

((((((Hugs to All)))))) ~

Ann ~

I know. Her comment sent about 5 responses racing through my head. I had to take a moment, because I wasn't sure whether I would burst out laughing or melt into sobbing tears. I attracted attention, because I had more than a few items, and a very large total at the end. I probably spent more on our groceries than the combined totals of every shopper in that store that entire morning.

I went to another store today, as Jim is gobbling up the bananas, blueberries, and strawberries, and quite a few other important foodstuff. This is good. But, I confess, zounds! It wears me out! After I unloaded the groceries, I cleaned up the kitchen, last night's leftovers, pots and pans, unloaded the dishwasher, attended to several of Jon's needs, did 3 loads of laundry, and made lunch for Jim and me.

Then I attempted once again for the dozenth time in a month to fix the pump in Michael's waterfall/pond garden (my avatar). This is Jim's job, but he's not up to it. And I'm not a handy person mechanically. The pump is running, but the waterfall isn't, because the pump isn't hooked up properly.

I ache from my neck to the palms of my feet. Quasimodo had a better posture than I do now. Jim sees me hobbling around and tells me to rest. I take a few minutes, but there is just too much to do. And the more I rest, the more the laundry piles up, the dishes accumulate, and the house doesn't clean itself.

It's March 6, and I still haven't taken down the few Christmas decorations I put up in December. At this point, it just may be Christmas all year long.

When Jim went to bed, he told me to "take it easy tonight." Okay. That means that I won't be cooking. I still have to tend to Jon. I will be up til at least 2 a.m. or likely 3, as has been the case the last several years.

When I go to bed, Jim tells me to get "some good sleep." My body clock wakes me at dawn. So I get about 3 hours of sleep, if I'm lucky. That isn't long enough for restorative sleep, so I wouldn't refer to it as "good."

I'm not complaining, just sharing what life is like for our family now. This is how it is, and I have to conjure the energy to keep going, so I do. By the Grace of God, I do.

funnylegs4 ~

Jim has told me that he wants to feel useful and hates to see me doing everything. I do appreciate this, as I've been incapacitated for a few days with sprains in my ankle and my knee. Just a few days of being out of commission drives me bonkers.

But this is so different. Jim is winded from just the slightest exertion, like climbing stairs, or taking out the trash, carrying in a light bag of groceries.

He wanted to do the grocery shopping today. I told him, "You think that you can do more than you can, because you're not in pain or feeling ill. But you can't do what you used to do now. You couldn't be on your feet shopping for an hour, plus loading/unloading, driving. You're not up to it."

Tomorrow, he insists on driving to his oncologist appointment, and while I'm very nervous about it, I'm not saying "no." It's only 4 miles, with valet parking at the door. But then he said, he'd stop by another grocery to see if they have his Quorn burgers. And I said, "Nope! Absolutely not!" He's going to have a blood draw, and he's already anemic.

Then chemo starts on Weds, and our friend will drive him to/from all three days.

Oh ... yesterday, Jim's hair began falling out in clumps during his shower. Although this is to be expected, we were still shocked at the amount falling out. Now, his hair is dropping out all over, and I'm hoping I can convince him to let me shave his head. I ordered some knit beanie caps for him, because I'm sure his head will get cold.

Cancer Sucks!

There I said it!

Thank you all for your love, prayers, support, and encouragement~

Love & Light,

Rose

[mg12061]

Rose, I'm exhausted just reading all that you have on your plate. I wish I could help! Please be careful and keep yourself healthy. I know it's easy for me to say but it's so important. I don't know how you're getting by on that kind of sleep.
Sounds like Jim is eating really well hopefully you are too.
Not sure how I would have reacted to the Vacation comment!
As always your family is in my daily prayers.
Mary Grace

[Earth Mother 2 Angels]

((((((Mary)))))) ~

Thank you so much for your prayers. It means so much to us. I can't convey how much it helps us to know that others are praying for us.

I'm doing the best that I can to keep myself healthy ~ taking my vitamins, trying to eat as best as I can. I haven't had a good night's sleep in 47 years. This is old hat to me.

I don't know how I do it either. But as I said, by the Grace of God ~

Jim saw his oncologist today, and she remarked that he is in really good shape, all things considered. His 2nd round of chemo tomorrow will be with the same drugs, which he received in Round One, even though she doesn't feel that the drugs have helped him.

She intended to give him 4 rounds of these drugs, but if he doesn't show improvement after this round, she is going to try immunotherpay, Keytruda, which is the drug being given to former President Jimmy Carter. He is responding well to it, and he's 92 years old. His skin melanoma metasticized to his brain and liver.

For the past few days, Jim has been coughing excessively. His doctor prescribed a codeine cough syrup. Jim said, "I doubt that 5 ml of this codeine will knock me out." Yeah. Well, he's been asleep for 6 hours, not coughing. So, clearly that worked.

His oncologist didn't mention the molecular/DNA results, and Jim didn't ask. He doesn't think to ask, plus today he was just exhausted from lack of sleep. He did drive himself to/from, and that went well.

We do what we have to do. You, me, everyone ~ whatever life presents, we have to deal with it the best way we can. That's what we're doing now.

Waiting for the report on Kathleen's 20th birthday, including photos (and video?)!

Thank you again for your prayers. Please know that you, Kathleen, and your beautiful family are in our prayers always.

Love & Light,

Rose

[Nick,Brian,andJon'sMom]

Dear Rose,

Thinking of all you and keeping you, Jim, and Jon in my thoughts and prayers!

Hope Jim is feeling well.

Marcie

[Earth Mother 2 Angels]

((((((Hugs to All)))))) ~

Thank you all for your love, prayers and support. It means the world to us. We are so grateful for you.

Jim didn't do well after his second round of chemo. His oncologist prescribed 2 hours of saline infusion prior to his last 2 days of chemo. On Friday, he came home weighing 9 lbs. more than he did on Weds. All water. He didn't/couldn't eat for 24 hours, and then I forced him to have a yogurt with blueberries.

Saturday night, he was vomiting mucous and water, and he'd lost 4 lbs of fluid. From peeing constantly, he became dehydrated, and he had pain in his kidneys. So, I forced him to start drinking water. He's been diligent about that since then. Getting plenty of water.

He was able to eat about 2 Tbsp of mashed potatoes and a half bowl of tomato bisque soup with saltines Saturday night. He kept it down and fell asleep.

It's been an uphill battle since then. He's lost 5 lbs since last week. All of the water weight is gone, and he lost 5 lbs, because he couldn't eat due to the fluid overload. He gets dizzy when he sits up, bends over and stands up. He wants to sleep all of the time, and he has no energy. I'm surmising that this is due to lack of nutrition, as much as it is anything else, or a combination of everything he is dealing with now.

After he got up this morning, so that I could go to bed, Jim had a bowl of Amy's Organic Rustic Italian Soup. It is chock full of veggies, chick peas, etc. But it's not high in protein. He ate half a bowl of cereal and drank 1/2 of his Orgain milkshake, while I was grocery shopping. Later, he polished off guacamole, which I made from a very large avocado.

And that's it! He went to bed and probably won't eat again until 2 in the morning! He cannot sustain himself on this!

It's hard to eat, when you are sleeping all of the time. But, if he had proper nutrition, he'd have more energy and be awake. Plus, he's anemic and needs nourishment to help that condition. This is the epitome of a vicious circle.

We have no idea why his oncologist overloaded him with saline those last two days. He didn't have that saline in Round One, and he was just fine. Even gained a little weight afterwards.

This is a setback of major proportions. Our cupboards and fridge are literally bursting with nutritious, protein rich food for him, but he has to be awake and feel like eating for him to benefit from it.

I'm quite familiar with malnutrition, as both of our sons were diagnosed with it, prior to their G Tubes. I can't bear the thought right now of Jim needing a G Tube, when we have all of this fabulous food waiting for his consumption. He can chew and swallow, so the only thing holding him back is a stomach, which has probably shrunk from lack of eating, and his inability to regain his zest for eating.

His next round of chemo is scheduled for 3/29, 30, and 31. Depending upon Jim's response to this last round, the oncologist will decide whether to give Jim Keytruda, which is an immunotherapy drug, and which President Jimmy Carter is taking for his metastatic cancer.

I need to call the nurse navigator assigned to Jim, who in 3 months has not contacted us. I need some help and some answers.

But, this week I've been waging other battles. Medi-Cal denied Jon his feeding pump. Last year, it was his formula, this year, it's the pump used to feed him that formula. Phone call on that to the nursing agency advocate assured me that an appeal is in the works.

I received a form for one of Jon's care programs, which I am required to complete and return in 30 days. Problem: Another person's name, address, phone number and SS# are typed onto the form I'm supposed to complete.

I've made 3 calls to the agency's rep, and she's called back once telling me to call her again. So I did, and I said, "I have a thousand things going on, and I can't sit here waiting for your call. Just call me and leave a message to tell me what I have to do to comply with this regulation. Are you going to send me a new form? Do I cross out her name and data and write in mine? Just tell me what to do, and soon, because I have to get this out of my way. I have other things to deal with now."

No call from her since that message yesterday.

And I spent over an hour yesterday trying to order Jim's nutritional shake, Orgain, from their website. I reset my password 3 times! Changed my user name 3 times! Finally, I sent an email to their site (no phone number listed on the site, for some reason), and I got responses telling me that I should try this that and the other thing. Which I did to no avail.

This morning, I received an email with a phone number, and I called and placed my order for 36 shakes. This saves me going to the store, hoping that the stores have them in stock (I have cleaned off shelves of this stuff at 2 different stores!), and carrying them into the house (they can be heavy when combined with other groceries).

Heavy groceries. What part of: "Please don't make any of the bags too heavy. I'm an old woman, and I can't lift heavy bags. Thank you." don't the grocery baggers understand?

I'm happy to report that Jon is doing very well, and that our friend is visiting every few days to turn Jon, and is available to transport Jim to/from his appointments and chemo. We are blessed.

Thank you again for your love, prayers and support.

We Live and Love in Hope ~



Love & Light,

Rose