Jim's Journey

[Earth Mother 2 Angels]

((((((HUgs to All)))))) ~

Donna ~

Thank you for the iPad suggestion. I will ask John to do that for us. Jim is getting the swiping thing pretty well now, and he's better with the stylus. We didn't have the YouTube App, so at the traffic light, John loaded it for us to the home page. It's on the first page.

I'm a tad embarrassed that we are daft with the iPad. Your mom, ANN's mom, and my friend's mom, all in their 90s ~ no problems. I just feel like my brain is so overcrowded, and I know that parental grief leads some parents to think that they are losing their minds. I'm holding on to every shred of a brain cell I have with my fingernails.

Stress makes me impatient, and technological stuff stresses me to the maximum. Always has.

On my walk this morning, I encountered a woman in her 40s walking her elderly husky. She is such a sweet dog, and she is 15 years old, so her hearing and vision are impaired, and her pace is quite slow. But that doesn't deter her from wanting to walk and smell and greet other doggies.

I walked along with the woman, and she began a conversation. I turned to pet her dog and said, "I so understand, sweetheart. I'm an old lady too."

The woman then asked, "What year were you born?" So I answered, and she said, "That's not old!" She told me about her parents, who are just a few years older than I am and their vitality.

"Well, I guess it depends upon the kind of life you've lived." I then briefly told her about my boys, my husband, and my lifetime of caregiving. "This, walking every morning, is the only thing I do for myself."

Her expression mirrored that of every other person, to whom I've told our story. Disbelief. Sadness. Curiosity. She offered her condolences as we reached the juncture, where I turn to go home. "I hope that we see you again," she said.

About the barking dog ~ Jim and I feel terrible, but we both agree that there is no possible way that we can have a dog. Thank you for your suggestion, but unfortunately, our neighbor doesn't speak English very well. It was a challenge to communicate with him and convey our thoughts and understand what he was saying. This dog will need seasoned dog owners with great patience to calm him and reduce his trauma. We already did that with our Cocker Spaniel Bonnie. We don't have the energy to do it again. And that hurts our hearts.

How rude of those doctors to mock you with laughter! I know you put them right with your silent stare. But, the audacity and insensitivity! I'm sorry that you had to go through that, Donna.

Many, many times I told the stream of specialists, who treated Jonathan and Michael, "You have hundreds of patients. I have two. No one knows them better than I do."

Many of them were able to set their egos aside and respect my opinion. But, just as many didn't.

Now, with Jim, it's a different kettle of fish, because Jim is able to speak for himself. Still, he depends upon me to help him make decisions, which are best for him. Everyone in Jim's medical realm knows about our boys and me. When they see me in action, they are still surprised.

I recall telling the ER doctor, when Jim was admitted for dehydration in April, "Just so you know that I know what I'm talking about ..." then explained about Jon and Michael, Jon's passing 5 days previously, and all that Jim had endured. I finished with, "He's severely dehydrated." The doctor asked Jim to open his mouth, and the doctor turned to me and said, "Yep. He's dehydrated."

It's all about authority.

Well, once again, I've digressed ...

Thank you, and everyone, for your love, prayers, support, guidance, and friendship. We love you and send prayers for you and your loved ones always.

Love & Light,



Rose

[Tamie]

Hi Rose. Came across this and thought I would pass it on to you. A neighbor, whose mom is fighting stage four pancreatic cancer, put it on the Neighborhood site. Her mom is taking RSO and a molecule from bovine colostrum to fight her cancer after chemo damaged her system. I looked up the research and found a site from the Sloan Kettering Cancer Center. You can look at the research at mskcc.org. Thought it was pretty interesting and maybe something you could give Jim to bolster his immune system. Wish I knew about it when my dad was fighting his brain cancer. Maybe you already know about it?

[Donna Thomson]

Hi dear Rose, Oh don't feel badly that it's taking time and energy to get the iPad down! There are still many things I can't do on it (I much prefer my laptop!) and my Mom spent the first several months poking at the air ABOVE the screen - she couldn't remember she had to touch it! It took ages but by trial and error we simplified it so much so she could just really look something up on google and read posts on facebook from her kids and grandchildren. That's all she wanted. She never wrote anything herself but she had a few friends who helped her at the seniors home look stuff up. My dear, I will thinking of you and Jim tomorrow at your appointment. I pray it goes easily and without pain and claustophobia for Jim. Those scans are so difficult. I hope the poor pup will find a lovely new home. xoxo Donna

[Earth Mother 2 Angels]

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

Tamie ~

Thank you for this information. I know about RSO, but I haven't read anything about bovine colostrum. I went to the Slone Kettering site, but I couldn't find anything there about RSO and bovine colostrum. If you have an exact link you could provide me to take me to the article, I would really appreciate it.

Jim is already taking THC oil, as well as CBD oil, in capsules. We strongly feel that this is why he is doing as well as he is. Aside from using an indica rather than a sativa strain, the RSO recipes I've found don't specify a particular strain within those genres.

I will mention bovine colostrum to Dr. K tomorrow. His response should be interesting.

I hope that you, Tyler, Jerry, and your family are well. You continue to be in my prayers.

Donna ~

Jim had his scan on Tuesday, and he did very well. The CT scan isn't enclosed like an MRI or PET scan. We are waiting for the results, which I hope will be posted on his health portal tonight, so we can see them before we see Dr. K tomorrow.

I emailed Dr. K yesterday to ask whether he wanted a blood draw tomorrow, and he replied that he wants to wait another week. I don't know why. I'd like to know where his blood is now to see if there's an improvement or decline next week.

Today, I set up the iPad so that Jim could watch a couple of videos, while I did laundry and trash gathering. After they finished, he started playing his card game. After an hour of playing, I said, "Are you obsessed with it now, honey?"

He realized that he'd been sitting on the side of his bed, without back support for too long. I think I'll bring in the bed tray, so he can put the iPad on it, while sitting up in bed with his pillows behind him.

He doesn't think of these things, just like he keeps using his left arm in ways that he shouldn't, since that is the area of his pain. I found him last night, laying in bed, the TV tray with the iPad next to him, his right hand with the stylus, playing his game, his left arm raised and crooked at the elbow over his head. He wasn't pleased when I suggested that wasn't the best position for him to be in. He said he was comfortable. "Okay, but how will you feel later tonight or tomorrow, when you have aches and pains?"

So far, the barking dog is still here, as he just finished barking after 2 hours straight. Jim and I talked again about why we can't take in this dog. I just gestured around the living room, the floor, the coffee table. That's number one. And everyone knows the list from there in just basic care of a pet. We cannot do it.

Thank you so much for your prayers (and reassurance that there is hope for us with the iPad). You, Jim, Nick, and Natalie and family are in our prayers always.

Prayers and love for all and gratitude for your friendship ~

Love & Light,



Rose

[stillstANNding]

Good luck tomorrow, Rose.

ANN

[Earth Mother 2 Angels]

Ct scan results

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

Okay. The results are in. Here they are:

Lung Mass: Increase from 5 CM to 6 CM. 6 CM is 2.35 inches.

Bladder: A new 10 mm (.04") intraluminal (inside a tube) mass, suspicious for malignancy.

Left Sixth Rib: Lytic (cell disintegration) and erosive change, new and suspicious for malignancy. This is the location of the pain, which Jim has been experiencing for a few months on and off.

Colon: Colonic wall thickening correlating to colitis.

I had to look up several terms. And our printer didn't want to cooperate with me! I wanted to print out the results to discuss with Jim. Finally got it to work.

Jim was calm as I read the results to him. He said, "It's not unexpected, honey. And it could be worse. Right now, I'm feeling fine. So, we'll just have to wait til tomorrow to see what Dr. K has to say. Maybe there will be treatment, maybe not. But I don't want any treatment, which is going to debilitate me to the point of driving you into the ground too."

This is my beloved, my soul mate, worrying about me taking care of him, while he's battling cancer. He believes that it would be better for me if he just let cancer take over than for me to have to provide him with intense care.

"But then, I'll be alone. Jonathan, Michael, and you will be gone, and I'll be alone. What is left for me then? I don't want to lose you."

I recalled that night in April, when I thought I was going to lose him in the ER. And how very ill he was on 3 liters of O2 in May, when we last saw Dr. K.

For his CT scan, Jim didn't need a wheelchair. The unit is on the first floor, and Jim walked right in, no problem. After the scan, we walked out to the front lobby, and then he walked to and from a bathroom that was much farther than he's used to walking. No problem. Then out to John's car, which was waiting to get in the pick up line. More walking than Jim is used to doing. No problem.

So, he doesn't seem like he is failing or like he has more cancer in his rib and bladder, possibly colon. That makes these results a bit more difficult to fathom.

Dr. K's note on the portal: "Some progression. Let's talk tomorrow."

Well, yeah. That did give us a chuckle. As if we would go there tomorrow and say, "We don't want to talk about the scan results. What else you got?"

We're maintaining, trying to keep a balance, and not drop to the depths of despair.

It could be better, but it could also be much worse.

Thank you all for your love, prayers, support, guidance, comfort, understanding and friendship.

We love you and pray for you and your loved ones every day.

Love & Light,



Rose

[SuzE-Q]

I'm so very sorry, Rose. A lot to take in.

I hope the appointment goes well with Dr. K in the morning.

[Earth Mother 2 Angels]

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

SuzE-Q ~

Thank you so much for your support. It is a lot to take in. Here's how today went:


This morning Jim’s shoulder/back pain was worse than it has been. He took 2 Tylenol, a shower, and I rubbed Aspercreme on the area. Then he felt very cold, shivery, and snuggled under the blankets, while I got ready to go to Dr. K’s visit.

All dressed and ready to go, wearing a lovely yellow top, which I’ve had for maybe 2 years and never wore, I found Jim tending the wound on his hand. I opened up the betadine swabs and droplets splashed on my top. Well, it looked nice on me for 5 seconds. I guess I’ll never get to wear it again, since it’s betadine, which stains.

I changed my top, came back down, Jim mentioned the trash bins needing to be brought up, because I couldn’t see them , even though I put them out there last night. Helped Jim into the van, brought up a bin, left the other, got in, turned on the ignition, and Jim told me how to back out of the driveway.

“I’ve lived here for 42 years, honey! I know how to back out of the driveway. Please don’t tell me how to drive again. Thanks.”

But he did, of course.

“Honey, I drove from the East Coast to the West Coast and back 6 times. Once in a U Haul It truck. I drove through a blizzard in Chicago, a torrential rain storm in downtown Manhattan on a Friday at rush hour. I think I can handle driving this route that I’ve taken a thousand times. Thank you for the advice. I love you. Be quiet now.”

Once we arrived, every woman we encountered greeted Jim with glee, “HI! It’s been a long time since we’ve seen you! How are you?”

He said, “It’s been up and down, but I can’t complain.”

One gal responded, “You never complain! You are such a nice gentleman.”

He is, definitely, and he’s quite charming, and women just love his British accent. In the flurry of all of this attention, I introduced myself, “Hi, I’m Rose, Jim’s wife.”

I received a warm welcome. When the nurse taking Jim’s vitals talked about having empty nest syndrome, because her grown kids have gone off to college, Jim looked at me and said, “We have empty nest syndrome too.”

Then I added that our children had passed. She was very saddened and compassionate.

We waited 45 minutes for Dr. K, and he entered with his soft spoken kindness and smile. He sat on the stool, then crossed his legs yoga style. He sure has great balance!

He showed us the CT scan with comparisons to previous scans.

TUMOR

The previous cavitation (hole in the middle of the tumor) is now filled in, which means that the tumor is growing into itself. That is why it is expanding.

He said the growth is slow, with 1 CM in 5 1/2 months. But now that it is 6 CM, it’s over the cutoff for quick radiation treatment, i.e. two one week, two second week, one third week. Now, radiation would be for 3 weeks, 5 days a week, because the tumor is larger.

He wasn’t sure whether Jim would be able to tolerate going through all of the staging and that constant traveling with no breaks, as well as being on that hard surface, tied down, when he has claustrophobia.

BLADDER

He showed us the 10 mm growth on Jim’s bladder and said he didn’t quite know what to make of it. It could be lung cancer metastasized to the bladder, or a new cancer on the bladder, or something benign.

Jim urinates constantly, because he’s on Lasix, but he has no symptoms of pain, or blood, change in color or foul odor, etc.

Dr. K said that he could refer us to a urologist, “but no surgeon is going to touch you, given your current blood levels. So, even a biopsy of this spot on the bladder is off the table.”

He said that we’d keep an eye on it, but he didn’t order another CT scan for the future.

6TH RIB

Dr. K surmises that the pain in Jim’s shoulder/back is the tumor, which could be pressing on that part of his lung. He also said that the deterioration in the bone indicated that cancer was likely present.

“But, it’s not bone cancer,” he corrected me, “It’s lung metastasis to the bone.”

Not much we can do about that either.

BLOOD WORK

Three times Dr. K said that Jim had a blood transfusion last week, and I corrected him that he had an iron infusion. He had forgotten that Jim was iron deficient.

He doesn’t want another blood test until two weeks from now. I don’t get it, but he said it takes that long for the iron to kick in.

He talked about Jim having Neupogen injections at home, administered by me. I told him that I’d need training from Jim’s home health nurse, and he said, “It’s easy, just pinch a roll of fat, and stick it in.”

I’ll get Nancy to show me how to do it properly, if it comes to that. But, given Jim’s previous reaction to Neupogen, I don’t want to do that at home on my own.

He did say, “Jim, you’ve been bleeding somewhere internally, which is why your hemoglobin is so low, and you’re iron deficient.”

I had to remind Dr. K that Jim is taking Nexium, which he prescribed, and we discussed in emails.

I felt like he was on a tropical island sipping Mai Tai’s, while we were in a canoe off shore without a paddle.

NEXT VISIT

December 18. Three months. Blood draws once, not twice a month, by home health nurse. No scan ordered. Referral to the new radiology oncologist to discuss radiation options for Jim.

Happy Halloween! Happy Thanksgiving! See you before the holidays in December! That’s how it felt.

On the way home, I said to Jim, “Well, at least he thinks you’ll still be here for Christmas.”

“I thought the same thing. So, there’s that.”

We’re on our own, it looks like.

I’m still processing all of it, as well as news I received today about a dear friend, who has a serious illness. Another dear friend is awaiting test results. We are at the age now, where this keeps happening, and it is heart wrenching.

As always, we thank you for your love, prayers, support, and continuing friendship. We pray for you and your loved ones, and send you healing, positive energy, and peace.

Love & Light,



Rose

[callyflower]

Well crap! Please know that you can bother the dickens out of Dr K whenever you have questions. He works for you and his orders for today are not set in stone.

Neupogen is very easy to give at home. I gave them to myself in my tummy flab. Just remember to use Claritin the day before, the day of, and the day after each shot to help control the side effects. Nancy should be able to easily instruct you.

In my opinion, the blood counts are more threatening than the cancer at this point. I would encourage you to do everything possible to keep those in check. I am a vegetarian myself, and I think if in this situation I would be considering the addition of some organic animal proteins right now. Think of it as medicine.

My father had prostate cancer and then got bladder cancer. It was not metastasis in his case, but a new primary cancer. He had symptoms similar to a UTI when he was diagnosed.

Keep on loving each other. It’s the most important thing of all.

C

[Earth Mother 2 Angels]

((((((callyflower)))))) ~

Thank you so much.

First, I didn't mention that Jim has colon problems, but Dr. K didn't want to put Jim through a colonoscopy. He sent us home with an occult blood test.

So, I don't think that Jim's digestive system could handle meat right now. He has Orgain, which he needs to once again start drinking. It's difficult for him with Ascites and fluid retention. He has "normal" bowel movements all day and night, good color, formed, normal appearing.

We've been vegetarian for nearly 24 years, and I just don't think that his gut can manage meat now. I would be afraid to try it with him. I understand your point, but I really would fear his reaction.

I did question Dr. K on nearly everything, and as I mentioned, I reminded him of the iron infusions and Nexium. I think I am going to email him and say that I'm not comfortable waiting for 2 weeks for a blood draw, and I want one now. And again next week. What is the point of waiting? I want to see a trend of decline or improvement. I know how to follow blood test results. I've been doing that with my sons for nearly 50 years. I will ask Dr. K for this. Just to satisfy me and shut me up! Why not, Dr. K? Jim and I are paying for the port supplies to have his blood drawn. Let's do it.

Jim had a terrible reaction to his first Neupogen shot, which is how his total decline began in January. He was hospitalized several times from January to April this year after that reaction.

In April, while in the hospital, Dr. K told Jim and me that if he didn't have Neupogen, he would die. So, he gave Jim 1/3 of the usual dose, and it worked, and Jim didn't have adverse reactions. I'm sure that Dr. K has forgotten all of that, if he can't remember that Jim had iron infusions not a blood transfusion.

We have to be very careful with these drugs, as Jim has shown sensitivity to them. Like the antibiotics in the hospital, which caused him to have excessive diarrhea. And his aide said, "I'm not cleaning this up!" I told Jim to tell the doctor that he didn't want the antibiotic any longer, and that he'd had diarrhea to the extreme. The doctor argued with Jim. But Jim insisted, and the antibiotic was stopped, and so did the diarrhea.

I am so sorry that your dad had prostate and bladder cancer. It's just so much and so unfair. You work all of your life, pay your taxes, contribute positively to society, and in your "golden years," you get cancer or some other horrible debilitating disease.

Thank you for your insight and sharing your experiences with us.

As for loving each other, well, there's no chance of that ever fading. As we were making the appointment for Jim in December, the woman setting up the appointment chatted with us, knowing Jim well. It was also her birthday, as there was a sign above her and flowers on her desk.

She said that is was great to see Jim after such a long time, and that it was nice to finally meet me.

Jim said, "Rose takes fantastic care of me, which is why we're here today."

I smiled, kissed Jim on the cheek, and said, "It's my honor and pleasure to care for you. You are the love of my life."

The appointment woman came around to us, and said, "That is so perfect, and so sweet."

In the lobby, we watched a husband and wife, who were maybe 10 years older than us, clasp hands, as they walked to the door. I looked at Jim, took his hand, and said, "That's us." Jim nodded.

And that will always be us.

Thank you again for your very helpful suggestions. Dr. K will be getting an email from me on Monday morning.

Love & Light,



Rose

[callyflower]

The only thing about frequent blood draws is just that...you are removing precious blood. When I was hospitalized with neutropenia, they agonized about drawing even the smallest amount. Just a thought.

[Virginia]

Rose, I was so hoping for a bare minimum of "no change" as far as the main tumor goes. I feel sure that you will remind Dr K Monday that Jim can only have 1/3 dose of Neupogen when you e-mail him.

Sorry that the two of you had a pretty rotten day "as far as news goes". I will still be praying for better news each time. Did you question Dr K regarding the change in the amount of times Jim is to get blood draws. If he doesn't back down ask him why. If as callyflower stated he is concerned about even that much blood being taken that is one thing, but otherwise I don't get it. Of course you are anxious and want to know as often as possible just what is going on. Having to wait to find out is kind of tortuous.

I have a feeling that Dr K feels that he is already doing all he can through home health, and that he gets those results, so in his thinking there is no need to have you come in any more often. Just remember to e-mail him anytime anything at all comes up. After all, this is not a hangnail.

The two of you are always in my prayers.

[Jeanie Z]

:) Rose & Jim I am so sorry your news was not better. I will add some extra prayers for you. Love, Jeanie :)

[Earth Mother 2 Angels]

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

callyflower ~

Excellent point about removing blood too often. I'm used to being in ICU, where they took Jonathan's blood every day. One stay was 40 days, one was 45 days, the least was 10 days. And Jon was anemic from Depakote, so he needed that blood, which is why he had several blood transfusions through the years.

Because Jim's hemoglobin was 7.6 in his last draw over 2 weeks ago, I worry that Jim might need a blood transfusion. Since Dr. K kept referring to his iron infusions as a blood transfusion, I think I will ask Dr. K in my email whether he feels Jim needs or would benefit from having one.

Everything is a delicate balance.

Virginia ~

Yes, Dr. K is accepting home health (Nancy's reports) as his guide in caring for Jim, for which we are grateful. But Nancy only visits, when Dr. K orders a visit, and it's always been to draw blood.

I think that he's depending upon me to notify him of changes in Jim's condition, because he realizes now that I know what I'm doing as a caregiver. When I said I needed training to give the Neupogen shot, he smiled wryly. "I'm SURE you can do it, Rose." He didn't say anymore, but I suspect he was thinking about Jonathan and all of his needs.

Jim also tells everyone how well I take care of him and that he wouldn't be here without me.

I told Dr. K's nurse that if Jim had been left in the acute care facility, he would have died from neglect, when he became dehydrated. When we described the nurse, with dirty fingernails, who didn't wash her hands or wear gloves before inserting an IV, Dr. K's nurse was stunned and shook her head. "That needs to be reported." I told her that I described everything wrong with that facility to Dr. K. That should have been enough for him to look into the place, but I'm sure he didn't.

Thank you so much for your prayers, and please know you are always in our prayers too.

Jeanie ~

Thank you for your prayers. We pray for you too every day.

TODAY

Jim managed to sneak in a few hours of sleep here and there through the night and morning. He is disrupted by bathroom breaks. He's often up at 2 or 3 a.m. having tea, 1/2 of a Boomin' Berry bagel, and watching golf or soccer on TV.

His rib/tumor pain is less today, thankfully. It's more of an aching now, he says. Not a sharp pain, which caused him to groan several times yesterday.

He ate his usual breakfast of cereal and fruit, then for a late lunch, he wanted scrambled eggs, veggie bacon, fried tomatoes, and toast. He enjoyed every morsel. I'm so grateful that his appetite is good.

And his vitals continue to be excellent, and he's not needing O2. So we count our blessings constantly.

I asked Jim whether he wants to consult the new radiology oncologist, and he said he did. When I asked him if he thought that he could tolerate all that he has to endure to be staged for and then receive the radiation therapy, he said he didn't know.

I fear that he won't be able to tolerate it, as I said in my previous post, as does Dr. K.

The staging took the wind out of his sails the last time. He never had the chance to start radiation after that, because he was so ill. In fact, I remember that the morning when Jon passed, the radiology oncology coordinator called to ask if Jim was able to schedule his treatment. I was sobbing when I told her that we had just lost our beloved son, and then she started to cry. It was awful, and yet, she comforted me and assured me that they would do anything to help Jim, when he was ready.

I don't know what we're going to do. We need to take time to discuss the pros and cons, the risk and the benefits, and what could happen to Jim whether he does or does not have radiation.

It is a difficult place to be in now. Radiation, as we know, has many side effects. I just hate to put Jim through that while he is feeling as well as he does now.

We are praying for Divine Guidance.

Meanwhile, we are praying for people, who we love dearly, like my uncle, who has Alzheimer's, our dear friend just diagnosed with a progressive neurological disease, and another dear friend awaiting the verdict on biopsies. It is a stressful and sad time for all of us. We have each other to hold onto, to love and pray for, and our ties are strong. We'll all see this through together.

And, with the love, prayers, and support of all of our wonderful friends here, and each of you are facing your own challenges, we thank you. We love and pray for you and your loved ones. Always.

Love & Light,



Rose

[agate]

Rose, doctors and test results can be so very wrong. You already know that, I'm sure. Wasn't Jim told he had only a short time left to live but he proved that wrong? I'm hoping that this news is going to turn out to be just another unwelcome development but nothing that will affect him seriously.