A Prayer Request For Jim

[Earth Mother 2 Angels]

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

Thank you so much for your prayers, support and healing positive energy. We feel the power of your energy. It is working.

Jim is doing quite well. His biopsy site is perfect. He's not experiencing pain, and his coughing and blood output is significnatly less. He has actually felt good this weekend.

We spent it quietly, watching movies and football, laughing, singing, and having fun. We created memories.

Jim's appetite has improved greatly, which is wonderful.

We had to turn Jon to change his sheet and his under pad. Unfortunately, the lift and straps option didn't work, so Jim had to turn Jon and hold him, while I cleaned Jon, and placed his new sheet and under pad. Jon was very cooperative, so Jim didn't strain too much.

But we can't continue to do this. So, I'll be exploring options in the next week to help us safely turn and lift Jon.

We are expecting calls to schedule Jim's PET scan and oncology appointments this week. We are ready to move forward. We want this treated and gone, so that Jim can recover and be cancer free. And we need to do this now, before his Medicare benefits are gutted.

So much ahead of us, a lot of it the unknown, but we are ready to fight and to get the services and treatments, which Jim deserves and has paid for over the last 4 years to Meidcare.

Thank you again and again for your love and support.

Love & Light,

Rose

[mg12061]

Rose, I'm so glad to hear that Jim came through the test without complications and is recovering nicely. Sounds like a nice relaxing weekend which is I"m sure what the Dr. ordered. I will be praying for he best possible results on the test.
YOur story about how well the staff treated Jim really melted my heart. I'm sure they saw what a wonderful caring person he is. He deserves the respect and care that he got. Thank you so much for your updates.
Mary Grace

[funnylegs4]

Hi Rose,
I'm so glad to hear that Jim is doing so well! That is a great sign! I'm no expert on cancer but from what I remember when my relative had it you have to keep Jim at a good weight by giving him foods with healthy forms of fat and food that boosts his immune system because a lot of meds they might give him will suppress his immunity. My relative was thin and immune suppressed at one point and that led to some pain during daily activity so you need to prevent that. You also need to be really careful about sugar because tumors feed on sugar. Specifically tumors mostly feed on blood sugar i.e glucose but the tumor will also suck up any sugar from sugary foods and try to use it to grow. I continue to pray that Jim recovers fully and the treatment period will be short and as easy as possible.

[Nick,Brian,andJon'sMom]

Hi Rose,

Happy to hear that Jim is doing so well. Continued prayers sent up for all of you!

Marcie

[agate]

Rose, I just saw this. I'll be hoping for the best for your Jim. My SIL (and several other people I've known) came on past lung cancer and lived many years. A good friend had it about 10 years ago--she's still playing bridge and taking care of her house and buzzing around. My SIL who just died at the age of 90 years and 6 months had lung cancer about 15 years ago and the last 15 years were cancer free. (She died because her heart gave out.) I could go on with more stories, but I'm hoping that Jim's chances are good too.

[SuzE-Q]

Hi Rose,

Agate was kind enough to let us know the challenges that you and Jim are currently facing.

Please know that you have support of the entire MS community.

I wish I lived closer, I'd be more than happy to help with Jon whilst you are off being with Jim.

It sounds like Jim has a good team around him with aggressive treatments and that he'll receive whatever care and medical interventions that are necessary once you know what you are dealing with.

Please don't hesitate in reaching out to our board as well for support, ok? We will always be there to support you in any and every way that we are able. Your local cancer agency may also have resources and assistance available to help you manage alternatives for Jon's care while you are supporting Jim. They are a well funded and organized group that have really put a lot of thought and attention into addressing the needs of patients and their families.

My thoughts and prayers are with you and Jim during this difficult time.

[Virginia]

Hi Rose,

Just wanted you to know that I and all of us on the MS forum are thinking of you, Jim and Jon. You have been in my prayers since hearing of this. I have read the post and realize what a special relationship you and Jim have. He certainly is a special and very kind man.

We will all be hoping to hear good news in the future. In the meantime prayers are being said by many.

[Earth Mother 2 Angels]

((((((Hugs to ALL)))))) ~

Thank you so much for your prayers, love and support. I can't tell you how much it means to us to know you are all sending us your positive, healing energy.

Jim's final diagnosis from his biopsy is invasive keratinizing squamous cell carcinoma.

Post Biopsy Recovery

It was not a good idea for Jim to turn Jon. He is still coughing up blood and mucous, much more than before the biopsy. He is being careful now not to use his left arm to lift or stretch.

His pulmo switched Jim from Z pack to Augmenten, as it was more related to the bacteria found in the blood work pre-biopsy. Thankfully, Jim never started the Z pack, but he is taking the Augmenten, because he has a reason to do so now.

His appetite is excellent, and I'm trying to feed him nourishing meals, which please his palette. It's a joy to watch him eat. We do know that cancer loves sugar (and so does Jim), so he is consciously reducing the sugar in his tea and avoiding those yummy cookies.

We're going to get him back on Matcha tea. And he's going to take Barlean's Flax Seed Oil with cottage cheese, part of the Johanna Budwig protocol for battling cancer. He has been taking Vitamin D3 for many years, and that will continue. Plus, we'll try to get him outside in the sun for 15 minutes every day.

I still need to do a lot of researching and reading. There is so much to learn and to know.

PET SCAN

We've been trying since Monday to schedule Jim's PET scan, ordered by the pulmo and needed by the oncologist to determine the course of treatment for Jim.

Jim has been disconnected numerous times, when he calls. We finally got someone to tell us that there was an unanswered question on the referral form, so they sent it back to the pulmo. They were waiting for a fax.

Okay. Now ... this radiology clinic is in the same building as the pulmo and the oncologist. Someone can't just hand carry the form to the pulmo and get the required notation, then return to radiology and call Jim? Is that too outrageous?

They wouldn't tell us what the glitch was, and Jim asked them repeatedly. We found out yesterday that they were verifying that Jim didn't need prior authorization from Medicare to have the PET Scan. He doesn't, and we already knew that. It's why we pay the big bucks to Medicare and our Part B supplement.

So we called them 3 times yesterday, on hold for 15 minutes, then getting disconnected. Jim was growing more anxious and angry. Who can blame him? He said, "It's not like I have a toothache!"

Well, to be fair, if we called our dentist and said, "Jim has a toothache," she'd see him immediately. The point being: This is CANCER. Post haste. We need it all done yesterday.

We finally got through today. Jim’s PET Scan is scheduled for Monday 1/23 at 2 p.m.


ONCOLOGIST

Meanwhile, the oncologist's assistant called Tuesday, while Jim was out getting gas in our van and picking up his Augmenten. He insisted on doing this. He needs to be useful as much as he can. It's only 2 miles.

So, I talked to her and explained our family, Jim, and that he needs a morning appointment. She said this was just for consultation. I explained that Jim hadn't had his PET Scan yet, and that we thought it would be better if the doctor had all of his test results at her disposal to assist in her development of a treatment plan. The gal agreed with me and said she'd run it by the doctor. (Jim’s oncologist is a woman.)

Yesterday, that assistant called and left a message that the doctor agreed to have the test first and then Jim's visit. We're trying to reduce the number of visits to medical facilities/doctors he has to make. And it just makes sense that she'd want all of his results. Since usually she would order a PET scan after the first consult visit.

So Jim called the oncologist's assistant and told her what's been going on with trying to schedule the PET Scan. She was not pleased that he was being mishandled, and she said that she would call radiology and get everything straightened out.

She didn't call us back, nor did radiology. So, we had to initiate it today.

Jim said today, "The longer we wait, the more this is eating me up inside. We have to do something about it soon."

No one in our situation should be dealing with something like this. Incompetency, glitches, bureaucratic red tape. Jim has insurance, very good insurance, which costs a goodly sum. We chose the best policies for our coverage, because we were preparing for a catastrophic illness, like this.

When Jim fussed about paying for Part D, drugs, when we weren't taking any drugs, I told him, "This isn't for now. This is for the future. We'll be glad we have it someday."

And now, it's someday.

We called the oncologist today and scheduled Jim’s appointment: Tuesday, 1/24, which happens to be Jim’s 69th birthday. What a birthday gift, eh?

Instead of the morning appointment, we asked for afternoon, because I want to go with Jim to this appointment. In the morning, Jon needs his food turned off and a G Tube flush with H2O, an hour later, his meds, and an hour later, his food turned back on. The doctor made an exception for us, as she usually does first consults in the mornings. Our appointment is at 2 p.m.

Our “adopted son” told us today that he will be here to sit with Jon, so I can accompany Jim to his appointment. Jon will likely still be asleep, if he continues his current pattern. He asked us about seizures, what to look for, and what his various “sounds” mean. We gave him a brief description, and we told him we’d talk more about it on Saturday, when he comes over to turn Jon. (more on that below)

Jon’s nurse told us that she really likes this oncologist, and her patients love her. She said that this doctor tells it like it is. We want that; what’s the point of skirting around the issues?

We’ve also read a few Yelp reviews on this oncologist, and one person said that she fights for her patients and is determined to conquer the cancer. I have a strong feeling that Jim’s situation will require aggressive treatment. We’ve discussed this, and Jim is open to whatever is suggested. We’ll have risks and benefits to weigh. This isn’t new to us, as we’ve been through this with both of our sons many times.


LIFTING/TURNING JON

This is the overwhelming issue we have right now. The straps didn't work. And Jim is suffering from turning Jon.

Tuesday, we managed to remove and replace Jon's under pad by sliding it beneath him. We did have to do a slight turn to finish it. But we're not getting to wash his back side, and changing his sheet is out of the question.

I have to find a solution to this, because Jim isn't going to be in any shape to turn Jon for a very long time. I'm on my own, and I need an ergonomic solution for lifting and turning Jon. So, I will begin pleading for help from all of the resources we have.

Today, our “adopted son” gladly came over to help us. He turned Jon so easily and gently, and Jon responded well. I was able to change Jon’s sheet, clean him, apply his cream, and change his two wound pads. Then, he and I pulled Jon up, and everything went so smoothly. He is a blessing for our family in so many ways.

I asked Jon’s nurse about getting a CNA to come out a few times a week to help me with the turning and lifting. She wasn’t sure whether Jon’s Medi-Cal will pay for it, but she agreed to look into it for us.

TAKING OVER JIM'S "JOBS"

So, I'm running the errands and doing the shopping now, after decades of staying at home, while Jim took care of those tasks.

Jim worries about me parking our big van, driving, being distracted. Getting in/out of the van, carrying and lifting packages, grocery bags.

But, I'm okay with all of it, strangely. I just ask for God's guidance to get me to and from safely, and I take the rest from there.

And in the process, I have driven past almost all of the neighborhoods, where I grew up (my parents moved several times to keep up with the real estate market at the time). The schools I attended. The churches I attended. All of the memories of my childhood, adolescence and young adulthood to now flooded over me.

Yesterday, on my journey to our organic grocery, I passed the cemetery, where my parents, former in laws, and several friends are buried. A funeral was in process. I prayed for everyone attending and apologized to all of my loved ones for not visiting for so long.

I followed the route I used to take to pick up my boys at their schools. And the memories just kept hitting me left and right as I drove. It was incredible.

I haven't seen the mountains in such a long time. They are still magnificent. Thanks to our recent rains, everything is green and lush. And this was reassuring to me.

It took me an hour and half in the store to find everything and two carts by the time I checked out. All of the other shoppers had hand baskets or were carrying a couple of items in their arms. When I pulled up to the checkout stand, the young gal looked at me like I just bought the store! “I’m stocking up,” I told her, “so I don’t have to come back here for a little while.”

Tonight, Jim requested spaghetti, so I whipped up a batch with all these gorgeous organic veggies and Field Roast Italian Sausages. Everything fresh and delicious. That will be Jim’s meal when he gets up at 2 a.m. for his shift, while I try to sleep.

COMMUNICATION

Jim and I talk about everything and always have. We’re running the gamut of emotions, thoughts, feelings, observations, fears, anxiety, hope, positivity, enlightenment, you name it. We’re also trying to remain grounded during all of these tests and coordinating the times and what he needs to do for each one.

It’s a balancing act. On a tightrope, blindfolded, carrying a 1000 pound weight.

We’re watching old (I mean OLD) movies; yesterday “The African Queen,” day before, “The Thin Man." We’re finding our moments of escape. We are eating together as much as we can. We are making jokes and laughing, as we always do, and looking for our “half hour of laughter” every day.

And even though we’ve always been loving toward each other, it seems that we are holding hands, hugging each other, kissing, and comforting each other more often. Every day for 25 years, we have said “I love you” to each other numerous times day and night. It seems we say it even more frequently now.

If Love was the cure for cancer, Jim wouldn’t have it in the first place. But Love is part of the cure for cancer, an extremely important part. And we know that you are surrounding him, me and Jon with your Love, and that is everything to us. I can’t convey how much it means to us.

Jim and I read your responses today, and we cried in gratitude for the outpouring of your prayers and support. We thank you so very much for traveling with us on this part of our journey.

I’ll try not to write a novella with every update. I wrote this over 2 days, and I just had a lot of information to share, and a lot on my heart and spirit as well. Thank you for reading, listening, caring, and praying for us.

Please know that you are in our prayers and that we love you ~



Love & Light,

Rose

[funnylegs4]

Rose,
Just know you and Jim are handling this like troopers. Your honesty and love will carry you through. I understand the mixed emotions from experiences I have had. Allow yourself to feel them and know God will sort it out. I'm relieved that Jim is eating well and that you found a temporary solution to lifting Jon. I assure you if my balance wasn't so lousy and if I lived closer I would personally come there and lift Jon for you everyday. It would have been my honor to lift Jon. I pray you find a permeant solution ASAP. Perhaps try contacting some non profits that deal with situations like yours to bring the costs down? That way perhaps you can get around some of the insurance issues? Just a thought. I pray this doctor does a fabulous job and cures Jim. As for movie watching has Jon ever seen the original (old) "Planet Of The Apes"? I saw it recently and was pleasantly surprised by the content. I thought Jon might enjoy it. Don't worry about forgetting a few things here and there like the parking, you should have seen me today. I completely forgot the timing of something in the most ironic way. I thought I had lost my mind. I send all my love and prayers! I love your long updates. Post as much as you like!

[agate]

You and Jim will get the better of this cancer. I just know you will.

Hugs and more hugs, Rose.