Jim's Journey

[Virginia]

Rose, so sorry Jim could not keep his Friday appointment. I am so hoping he will be able to keep all the rest of them and get maximum benefit. I can see where tugging on that side would hurt him. I expect he needs to tell them on every visit not to pull on him on that side.

Glad he is feeling better today.

[Donna Thomson]

Ohhh dear, Rose. I am so sorry that Jim had a terrible night and missed his treatment. I am so very sorry that he was in pain. Happy though, that he is feeling better after a rest. Why do the hospital staff have to hurry and cause injury?! This makes me crazy - Would they do this with a newborn baby? Because that is how delicate Jim is now. Jim's and your experiences remind me of this piece that my friend and cancer patient Sue Robins wrote about her treatment: In my large mom purse, I carry around my high expectations for health care experiences. Being the mama bear of a kid of a disability has taught me a lot over the past 13 years. Now I’ve become a patient myself. Clinically, I know next to nothing about breast cancer, but I do know a boatload about compassion, respect, kindness and dignity.
I know the little things mean a lot. I know it takes only a minute to ask ‘what matters to you?’ I know that patients should have information shared with them in a way that they understand. I know the value of a kind touch and a gentle gesture. I know that hospital processes strip away dignity from already vulnerable patients. I know that what is a big deal for patients is often not a big deal to staff. I know that health care inflicts trauma on patients and that staff and physicians should be working hard to minimize that trauma with every single encounter. Most of all, I know that health care professions are intended to be healing professions, and I’m always disappointed when I bear witness to the contrary.
I had the notion that cancer patients were treated well. I think my tumour has been treated very well – and for that I am extremely grateful. I am also thankful to live in Canada, where inpatient hospital costs are publicly funded, and except for the ‘me not-working part’, our family won’t slowly bleed into bankruptcy like my American friends. The one thing I’m not sure about is if I’ve been treated as well as my tumour.
Last Tuesday, I had a partial mastectomy, another biopsy and a lymph node removed. So many strange encounters happened that day and I’m not planning on shutting up about best practice in patient and family centred care any time soon. I still believe that the only way change will happen is if we keep speaking up to tell our stories.
My husband and I arrived at the hospital at my appointed time, 6:30 am. The receptionist looked up at me and said sharply, ‘we don’t open until 6:45 – take a number and sit down.’
Like I was ordering deli meat, I took a number and dutifully sat down in the crowded, dirty waiting room. Posters were tacked up slightly askew on the walls and the fear was palpable in that little windowless room. We were mostly women waiting for breast cancer surgery – some alone, some like me, lucky enough to have a partner by their side.
‘Number 51’ they called. I stood up and followed the technician into the treatment room. I know they knew my name, and being referred to as a number set an uncomfortable tone for the rest of the long day.
Later, in a curtained pod pre-surgery, the nurse was assembling the equipment to start my IV. ‘Can my husband come in now? I need him to hold my hand while the IV is started,’ I asked, a confession of my needle fear. ‘No,’ she said, not making eye contact with me. ‘He can come in after.’
I shrunk back into my stretcher, afraid to make a fuss, hot tears forming in my eyes. The IV poke hurt, as did the tourniquet, and I had nobody to hold my hand.
Later, in radiology, wires were inserted in two places in my breast while I’m squished in a mammogram machine. This practice, done while I’m wide awake, is nothing short of barbaric. I hadn’t slept or eaten and was already whacked out with fear. My ears start ringing, my vision blurred, I couldn’t breathe and I knew I was going to pass out. The radiologist and tech stopped and gave me a break before I hit the floor.
‘I’m sorry for being such a baby,’ I said, very Canadian in my apology. Later, the Internet tells me that up to 50% of women feel faint during this procedure. Why doesn’t anybody tell me that so I can be prepared? Why isn’t there standard sedation? I feel grateful that my nurse friends coached me and I knew to ask for an order for sedation at pre-admission clinic. But the little Ativan doesn’t help much with my horror at more needles jammed into my breast and the sight of black wires coming out of my body.
I had counselled my husband on the drive to the hospital to ask the surgeon to talk to him afterwards so he can find out how my surgery went. ‘Okay,’ he says, strong, assertive and protective.
The conversation with the surgeon goes like this:
Mike: ‘Can you come and tell me how it goes after Sue’s surgery?’
Surgeon: LAUGHS and says, ‘Oh no, I’m too busy to do that. There’s a follow up appointment in a couple of weeks.’
(It has been six days and I’m still not sure how my surgery went. I don’t know how to get this sticky glue from the tape off me. I am bruised and scarred. I have blue dye seemingly permanently tattooed in my skin. My armpit is numb. My steri-strips are coming off. My hand has swollen up. I’m still really sore).*
Back from surgery, the nurse is eager to get me up walking so they can discharge me. I’m in a hospital gown. ‘Can she have a robe?’ my daughter asks, helping me out of bed. ‘No, just tie up the gown,’ the nurse responds. No? I’m cold and shivering and I have no clothes under the thin fabric gown. My daughter shakes her head at the nurse, goes to the supply cart, digs around for a robe and gently places it around my shoulders. My girl walks with me, pushing my IV pole while I shuffle to the washroom.
Another missed opportunity for a simple kindness. What is particularly awful to me is that I know to ask for what I need. My family is not afraid to speak up. But we were all dismissed, disregarded and not listened to in the smallest but most significant ways. I saw many people in the waiting room – what of the woman who was alone? Or the older lady who didn’t speak English? Or the woman there for a double mastectomy, her sad husband by her side?
This is random but relevant: Cleveland Clinic has released another great video about the patient experience. I’d add to their concept of ‘words matter’ that ‘actions matter’ too.
I am very fortunate that my dear daughter (a second year nursing student) stayed with me for the past ten days to be my caregiver. She distracted me, kept me company, fed me, looked after her little brother, drove me around and removed my dressings. Before she left, she gave me a list of Ella Rules to consider. Rule number ten said: Ignore stupid things – let yourself be upset but then let yourself move past it. This is sage advice from a 20 year old who has always been wise beyond her years.
I am not ungrateful for treatment, but I don’t feel grateful for my care. I do promise to go into every new health encounter with an open mind. As Ella advises, I will endeavor to either politely respond to or shake off negative experiences. For my own mental health, I can’t stew in this darkness. I need to stay in the moment and look for the light.
I’m not Number 51. My name is Sue. I’m a writer, speaker, mom of three, wife to Mike, advocate, friend to many. I like sushi, baths, books and yoga and I happen to have Invasive Ductal Carcinoma. Please treat me as well as you are treating my tumour – for I’m a real, live and still-breathing person too.
*note: I have an appointment with my family doctor today and I know she will take care of me. This experience has compounded my philosophy about the importance of primary care, even when you are in cancer care and surrounded by a bunch of specialists. Family physicians and family practice matters.
**edited to add: My family doctor fixed my ratty dressing, printed off the surgeon’s report, explained the contents of the report to me and then gave me a hug. THIS is what I choose to remember.

Extreme kindness is so important and people looking after Jim in the hospital need to take the time it takes to treat him gently. And to support you! I hope sometimes someone brings you a cup of tea while you are waiting for Jim. I there is a hug at the end too, for you. xoxo Donna

[Earth Mother 2 Angels]

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

Virginia ~

Thank you for checking in with us. Jim has had another good day, and he feels like he will be strong enough to have radiation tomorrow. I texted John, and he's on board to pick us up at 3:15 for the 3:30 appointment.

I am continuously cautioning Jim about his movements. He forgets and stretches or turns in a way that could cause strain on his back and his left side. Even when he uses his right arm, he is straining his back to a certain extent. He often says, "It didn't hurt when I did it." No, but it might later.

How is your jaw? Healing prayers on the way for you.

Donna ~

Thank you for sharing Sue's story. I'm so sorry that she has had to endure such poor care.

I will say that Jim's experience was unusual, based upon his previous care for his brain neoplasm in December 2017. The problem is that there are too many patients, not enough equipment, and not enough staff. That is why they rushed with Jim.

This is one of the reasons why I feel that I need to accompany Jim to these appointments. I know that I can't be in the room, when he has the treatment, but I can be there before and after it. If he's okay after a few treatments this week, I may take a break and try to buy a car.

I know. I know. But it would be so much easier if I could transport Jim. We will see, and we will take it as it comes, one day at a time.

Thank you all for your love, prayers, support, and walking beside us. We love you and pray for you and your loved ones.

Love & Light,



Rose

[Donna Thomson]

Hi dear Rose,
I am glad that Jim is feeling better but I hope he stays that way after having his next treatment. I am glad that you are with him too - what a blessing for you to be with him. It must be so scary for you both. I just wish the technicians took time to make sure that Jim is taken care of - I sometimes wonder if they realize how fragile their patients are!
Rose, your love for Jim and his for you are such an inspiration to me and I know to everyone else here too. This beautiful poem by Pablo Neruda reminded me of you and Jim. One Hundred Love Sonnets By Pablo Neruda More Pablo Neruda

I don’t love you as if you were a rose of salt, topaz,
or arrow of carnations that propagate fire:
I love you as one loves certain obscure things,
secretly, between the shadow and the soul.

I love you as the plant that doesn’t bloom but carries
the light of those flowers, hidden, within itself,
and thanks to your love the tight aroma that arose
from the earth lives dimly in my body.

I love you without knowing how, or when, or from where,
I love you directly without problems or pride:
I love you like this because I don’t know any other way to love,
except in this form in which I am not nor are you,
so close that your hand upon my chest is mine,
so close that your eyes close with my dreams.

xoxo Donna

[Earth Mother 2 Angels]

Our Cancer Community

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

Donna ~

Thank you so much for Neruda’s wonderful poem. I will share it with Jim after the football game. He’d be happy to turn off the game for me for a few minutes, but I’d prefer him to read it, when he’s quiet and more in the mood.

Today was an interesting experience.

PAIN

When Jim woke up about 5:30 this morning, he was in severe pain. I gave him a Tylenol with Codeine, and he was able to go to sleep. He even slept through me putting on my shoes in the living room, and leaving for and coming home from my walk.

When he woke up at about 9:00, his pain was better, but still there. I gave him his steroids, CBD and THC. He took another nap, and his pain was minimal and tolerable. He was determined to go for treatment today.

TRANSPORTATION

John texted that he’d forgotten that he and his daughter had teeth cleaning appointments at 4:00, and our appointment was at 3:30. We thought that Jim might go in quickly and be done by 3:50, and we’d wait until John finished his appointment, maybe 45 minutes. Jim didn’t want to do that. "I want to come home as soon as we can after the appointment,” Jim said. “Let’s take the van.”

So, I prepared myself for helping to get Jim in and out of the van without hurting him.

About 2 p.m. John called to say that he talked to the dentist, rearranged appointments, and that he would pick us up, and his daughter would bring us home. It worked out perfectly, and we didn’t have to go in the van.

THE PEOPLE WE MET

The Twins and Dad

As we approached the rad onc hard-to-open doors, we spotted a young man sitting in the oversized chairs in the corridor with two babies in their carriers on the floor at his feet.

Jim and I are attracted to babies, puppies, kittens, bunnies, like they’re magnets, and we’re lead.

We walked over, and I said to the man,”Twins?” He nodded yes. Of course.

Two absolutely adorable little boys, with their binkies and their rattles, and their tiny toes and hands. We talked to the boys, and they looked up at us with wonder and smiles. We congratulated the man and wished them long healthy, happy lives. He thanked us sincerely.

Golly, I wonder who might have been involved in that encounter? Hmmm … Yep, if you’re thinking what I’m thinking, you’re right. Jonathan and Michael must have had something to do with our meeting these precious twins, facing each other in their carriers, with their tiny toes touching each other’s tiny toes.

Lisa, A Married Couple, and Us

We checked in, and as always we smiled at everyone in the room. Jim always says, “Hi Folks!” and waves to everyone. For Jim, this is the cancer version of a pub. Everywhere I’ve been with him, this is how he approaches the situation and the patients and loved ones. We’re all in this together. I know your pain, and you know mine.

Lisa

We sat in front of a trembling, frightened woman, probably in her 40s. Rail thin. A walker in front of her. She had been there at 3:00, and it was nearing 3:30 now.

Jim looked at her and asked, “Are you in pain, hon?” She nodded yes, and he said, “It will be all right. What are you here to have done?”

“I’m having a mask made for my face, and I’m so scared,” she cried.

Jim then told her that he had a brain tumor in 2017 and wore a mask for 10 treatments. “It wasn’t fun, but it wasn’t terrible. And I don’t have cancer in my brain anymore. It’s scary at first, but you’ll adjust to it, and they are very nice here. I know it’s all strange. But you will be all right.”

At that point, Jane popped her head out the door to call Jim in for his treatment.

Jim said, “She has been here since 3:00 waiting, and she’s frightened and nervous. Please take her first. Please.”

Jane turned to Lisa and said, “I’m so sorry. But you’re scheduled for 2 different machines. I need the machine I’m using for him, and your machine is being washed down for you. Do you want some water? A warm blanket? I’m so sorry. I’ll make sure your technician knows that you need to get in right away. What can I do for you?”

Lisa thanked her and began crying. She thanked Jim and told him to go ahead. So, he did, and he assured her again, “Everything is going to be all right. I’ll be thinking of you.”

At this point, Lisa was sobbing, so I moved over to her side, and put my hand on her shoulder, gently caressing her. In her tears, she said she’d lost both of her parents, her son is serving in the Marines in Okinawa, she has a daughter and a granddaugher, and she’s been through so much in just 2 months, and she doesn’t want to die, and she can’t die, because she’s needed …

I comforted her and told her that tears are healing and necessary. "Stop holding them in, honey, because you’re trying to protect your loved ones. You have to cry, you need to cry, you deserve to cry.”

The lady on the other side of the waiting room, whose husband had been called in before Lisa, came over with tissues. She said, “I’m so sorry for what you’re going through, dear. This is very hard, I know. I’m praying for you.”

Then she went back to the other side of the waiting room, crying. I continued to comfort and calm Lisa by asking her about her family, and she said her husband was “no good,” so “my son became my protector, my strength …”

“Your hero,” I said.

“Yes, my hero, and it’s so hard on him to not be here now with me. I have to get better, I have to beat this.”

“Right now, what are you afraid of?”

“The mask.”

“Okay, let’s focus on that now, and put the rest aside. One thing at a time, okay? Okay. Jim had a mask, he even brought it home. It’s in our garage in a bag. It looks like a hockey goalie’s mask. It’s actually quite humorous.”

She smiled, “Really?”

"Yes. It helps so much to look at things with a sense of humor, when all around you is falling apart. You can save it for future Halloween parties. Trust me.”

I asked Lisa if she had anyone to lean on, and she told me that she has a boyfriend, who dropped her off, and will be back to pick her up. I told her that I was very glad that she had a loving boyfriend.

By then Lisa was finally called in, and she was calmer now, and maybe for the first time in her 2 month journey realized that she isn’t alone.

The Tissue Lady

So, I walked over to her side, sat down and asked her if she was okay. She nodded, as she wiped her eyes, tears just flowing like a faucet. “I had to walk back here, because I knew that I would start crying, and that wouldn’t help her. And I’m a caregiver, so I know better.”

I said, “I’m a caregiver too, which is why you and I just took care of her.”

She didn’t know what Lisa meant about “the mask,” so I explained it to her.

Her husband also has lung cancer, but had his lung removed. Now, he has tumors in other locations and a heart issue, which he’d never had previously. We talked about chemo, immunotherapy ...

She asked me what kind of caregiving I’ve done, and I told her in two sentences about Jonathan and Michael, and more tears from her. “I’m so sorry,” she wept, “I can’t imagine how hard this must be for you now with your husband, after losing your sons. Oh my.”

Lisa’s Boyfriend

Then, in walked Lisa’s boyfriend, and the Tissue Lady (I never got her name) called to him, “She just went in a few minutes ago.”

“Oh, okay, I’ll just text her to let her know I’m here.”

“She probably won’t have her phone with her, and she may not be able to move if they’ve started the measuring,” I said.

He smiled, “I’m going to text her anyway, so she knows I’m here.”

He talked over the chairs, as Tissue Lady asked him questions, and then joined us sitting across from us. He shared that she had tumors on her tonsils. Her PCP thought it was her ears, as she’d blown an ear drum last year. She went to an ENT, but he didn’t check her tonsils. Finally, her boyfriend asked her if she still had her tonsils, and she said yes. That led them on the path to finding out that she has cancer. It’s been about 2 months.

She was losing weight and fainting. Finally, she went to our hospital’s ER, and a CT scan revealed tumors on her tonsils.

He assured us that Lisa has a great support network, and “I’m the weak link, because I don’t know anything about medical stuff.”

“But you love her and are here for her,” I smiled. “That’s not a weak link. That’s the strongest link we have.”

Then, I told Tissue Lady and Lisa’s Boyfriend about our wonderful nursing service and encouraged them to use only that service, should it become necessary. Tissue Lady agreed and said that her husband is now on palliative care.

Jim appeared, and I waved to him, as I’d moved to the other side of the waiting room. It’s a pretty small room. I stood up, shook their hands, told them they’d be in our prayers, and “We’re going to be here everyday for about 3 weeks, so we may see each other again.”

IN THE CORRIDOR WAITING FOR JOHN’S DAUGHTER


As a gentleman approached behind me, Jim sitting across from me, smiled, and said, “Hey! How are you doing? Is everything going okay for you?”

I turned, and the gentleman had a prosthetic arm with a claw rather than a hand.

He grinned, “Yes, everything is going pretty well. I’m learning how to use it, and it’s working really well. I like this one, because I can grab and lift things, and I can open bottles of water. I have another one with a hand, but the hand is just for show, like when I go to church.”

Jim commented on how well he used his arm, and he said, “Well, I only have one arm, so I have to make this one work.”

I shook my head in amazement. “You have two arms, as far as I can see.”

“You know, you’re right. Thanks!”

Friendly parting with “take care” and “see you again” and I just looked at Jim. We didn’t have to say a thing. We just knew what we were both thinking and feeling.

I told him about Lisa, the Tissue Lady, and Lisa’s Boyfriend, while we waited for John’s daughter.

The next person we saw was Mark, the CT scan tech, who treated us so well and just loves Jim. He was on his lunch break! He stopped to tell Jim that he was looking good, asking how he was feeling, acknowledged me, and said we were in his prayers always.

When Jim had his CT scan, and I told Mark about Jonathan, Mark was crestfallen. “Jim talked about Jon all of the time, and you. I’m so sorry.” He had tears welling.

It seems no matter what time we are there, Mark walks by. Hmmm …

OUR CANCER COMMUNITY

We are part of a community now. A fellowship of those suffering, and those dedicated to healing and caring for them.

Jim and I greet everyone with a smile, and those smiles are most often returned. If you’re in a medical facility, it’s likely not for a good reason. When you come to this medical complex, you have a problem and are seeing a specialist, having a test, or an infusion. And when someone smiles at you, it’s hard not to smile back. And even if you don’t smile back, someone you don’t know smiled at you with understanding and compassion.

We also talk to other patients, when we feel they might be receptive, or as with Lisa, when she needed help. Alone, afraid, and there we were, probably her parents’ age, with a lifetime of experience in caring for others.

The first thing I said as I approached Tissue Lady was “Cancer sucks!”

She nodded in agreement as she wiped her tears.

We are all in this together, so let’s reach out and support each other. Today, I felt like we established a mini support group, and everyone of us walked away with a new perspective and feeling understood and accepted. And Loved.

And none of this would have happened, if we all hadn’t needed it to happen. We all needed something today, and we found it in each other.

It reminds me of all of the days, weeks, months we spent in the hospital with Jonathan and Michael through the years, and how many friends I made in ICU, and the incredible stories they all had to tell, and how they touched my life.

Many times, people are uncomfortable with reaching out to each other in these situations, but Jim and I are not those people. I’ve spent 50 years in this environment, and Jim has had 27 years in hospitals, doctor’s offices, ICU, step down, ER, you name it, and now about 4 years on his own journey. That is probably atypical.

We know how comforting it is when someone understands your pain and fear and reaches out to comfort and reassure you. We know how good it feels when someone cares about you, shows an interest in you, loves you.

So, in every way that we are able, we will continue to be supportive of every patient and their loved ones, who we meet, and thankful for the medical professionals, who work tirelessly to treat and care for us.

Thank you all for reading this very long post, and for your love, prayers, and unending support. We love you and pray for you and your loved ones.

Love & Light,



Rose

[Donna Thomson]

Dear Rose,
Thank you so much for sharing such a vivid description of your day, your community in all its deep emotion. I read through everything you had written and gasped at the end because I had been holding my breath while reading every word! I was so engrossed in your waiting room, hoping for relief in Lisa's heart and also the tissue lady. I wondered about the boyfriend - would he be kind? (He was) Your words and Jim's too were so comforting to Lisa and to the tissue lady. Even the stories of Michael and Jon give meaning to the lives of care staff (I am sure they think, "That is why I chose this career - because I care deeply about patients like Rose and Jim and their sons"). So many layers of meaning and memory.
Thank you, Rose! I hope Jim likes the poem - I thought it was beautiful - just like you both.
Donna xo

[Earth Mother 2 Angels]

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

Donna ~

Thank you, as always. I wrote a lengthy reply last night, then left to tend to Jim and didn't post it. Today, we have other things on our mind.

FIRE

When we arrived for Jim's radiation appointment this afternoon, the receptionist told us that there had been a fire adjacent to one of our local freeways. I looked on the iPad for more information, and it had been contained after burning 16 acres, thankfully.

However, when I called John to pick us up after the appointment, he told me that a fire was raging next to the hospital. Fortunately, John was able to get through, before the road was closed. As soon as we stepped outside, we could smell the fire, and the smoke was pretty intense on the drive home. Traffic was backed up, of course, in all directions.

We could see the plumes of smoke churning upward, but buildings obscured the flames. Fire trucks were racing to the scene from every local station. It's so close to the hospital, and that is quite alarming. There are also homes in proximity to this fire, as well as many nursing homes.

Where we were admiring the super bloom and everything being green in April, now that is gone. Everywhere we drive around our city/communities, we see dry brush and chaparral. Just waiting for an ember.

John's home backs up to an open preserve, so they are keenly aware of fire danger and on alert all of the time during "fire season." Our home is further from the open spaces, but we also know that embers can travel a mile or more with these winds.

The winds have been fierce today, starting at 8 a.m. Jim slept most of the day and missed much of it. But I was on alert, knowing that these winds can generate a fire in a second.

We have a very heavy potted succulent plants on our patio table. It blew over. A basket was blown off of another table, half way across our backyard, and a succulent plant near our patio door toppled. Half of the outdoor carpeting on our patio is folded over. A good sized branch from our eucalyptus tree (which needs trimming desperately) now rests over Michael's waterfall pond. I worry about a branch falling onto our roof or through a window. I just haven't had an opportunity to schedule tree trimming, as I've kind of had my hands full lately.

So, now, I have to find our evacuation list. I made it a few years ago after our big quake with a focus on rescuing Jonathan during an evacuation. Jim and I can just walk and drive out of here in our van.

But, where do we begin? After we've scooped everything on the coffee table next to Jim's bed, meds, and other supplies, into bags and boxes, and his clothes, pillows, well, everything he needs, like O2 concentrator and portable. Nebulizer and breathing cups, BP monitor, Pulse Ox. Jonathan's and Michael's urns, photos.

Okay, I'm sure you get the idea that evacuation in a short amount of time is difficult for anyone. You walk away from your home, your history, your memories, everything you've collected and treasured and gifts and ... You just walk away from it, and you pray it will survive the fire.

It is absolutely heartbreaking. Your whole life gone. Wealthy people rebuild. The rest are left waiting for assistance to relocate, because they can't afford to rebuild. You don't just rebuild your house, you rebuild your life.

So many fire victims say to reporters, "Our home is gone, but we're still here and alive and our family is okay. We will survive this."

I think I've survived a bit in my life, but I can't imagine losing our home to a fire. I raised and cared for my children here. I married my husband in our backyard. Everything we have is here.

Right now, fire is encroaching on our hospital. We can't imagine what would happen, if our hospital was shut down or burned. It's unimaginable. This has been our family's hospital for over 70 years. My entire family depended upon this hospital. They do good work and provide excellent care top to bottom.

The helicopters have slowed down, perhaps because the winds are too strong for them to fly over us. Or fly at all. No sirens for awhile. I smell the smoke through the open window, and the sky is brown.

It was only a matter of time before our area was hit with fires. We just got a double jolt today.

Our fire department has been to our home dozens of times for our sons, the last time for Jonathan in April. They are wonderful, caring, strong, compassionate, and committed.

Firefighters deserve our highest respect. They see everything that the rest of us cannot imagine, and when fire rages in any location, they are there. It's a very strenuous job to fight a fire, and they are at risk. They are first responders, so they are at risk for their physical health and well being.

Please pray for our firefighters, ours, yours, everyone's firefighters. They are heroes.

I apologize for the length of my post. It's been an emotional day for us. But, I also wanted to provide you with some of the emotional issues people experience during these fires from first hand experience today.

Thank you all for your good thoughts and prayers. We pray for you as well. None of us is immune from some natural disaster.

Love & Light,



Rose

(I posted this same message in the MS forum Chit Chat thread.)

[funnylegs4]

Hi Rose,

Sorry for the delay in replying. Just busy. I have been watching the CA fires everyday on the news and praying you and Jim are not effected. The thought of you both going through a nature disaster with Jim in the condition he’s in is a horrifying thought. I know you would be so heartbroken to lose the home that’s so connected to John and Michael.

Your description of the day at the cancer treatment center with Lisa was so touching and yes it indeed shows that a sense of community and humanity can be fostered at our worst moments health wise.

Update on my end: J has a bad disc in her neck causing vertigo which will be treated. The appt about her uterus takes longer because her area has a severe dr shortage. :’( But she will get what she needs. Also heard from my friend with the stroke and his eyes are way better than they were a few months ago. He’s pain free, no eye pain whatsoever. :)

[Donna Thomson]

Dear Rose,
Jim and I have been watching the fires and have been so worried for you and for everyone in the state. We have two nieces in the Venice Beach area of LA and one of them has two children who are off school due to the fires and everyone has bags packed in case of evacuation. It is so scary - it seems like the whole state is burning and that in many ways, things will never be the same. I feel for the wine growers - with no power, they can't irrigate - to say nothing of the damage caused by fire itself. And so many people have lost their homes. Rose, if you are evacuated, I cannot imagine what distress that would cause you. It would be too too much for you and for Jim. I pray that you will be safe and that the worry of the fires will end with rain and no more winds. Sending love and prayers from Quebec where it is high winds today and heavy rains. Our power is still on but the creek in the back has burst its banks (we are safely well above it on a hill) and a huge branch just blew down right beside the house. We are fine but the weather is severe today and it just started to snow! The wind is something. I suppose this is all related to climate change.
xoxo Donna

[Earth Mother 2 Angels]

5 Days of Radiation, Only 9 More Days To Go

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

funnylegs4 ~

So glad to hear the good news about your friends, and they and you continue to be in my prayers.

I updated about yesterday's cancer center experience in the MS forum, agate's thread, "Happy Hallowe'en."

We met a young man and his mom 3 days ago, and they are there every day with us now. The young man has 5 weeks of radiation (Jim has 3 weeks). He is so handsome, sweet, and he and his mother have such a wonderful bond.

Jim, always the convivial one at the pub, greets everyone in the waiting room going in and coming out. So there were mom and young man, who were dressed up for Hallowe'en yesterday. Jim said, "Rose told me about your costumes, but I missed it. Where are your costumes today?"

I laughed, "Jim thinks that Hallowe'en should be like Christmas, where it just goes on and on and on..."

Jim went on, "I have the perfect mask to scare anyone, who comes to our door. It's my radiation mask, when I had brain cancer a couple of years ago. But we don't have trick or treaters anymore."

"Instead, he used it to scare me, when he came home from his last treatment. He walked in with it on and came up behind me. I turned around, and screamed. He thought it was hilarious."

Then Mom said the most wonderful thing: "I think we should dress silly every few days, so we can laugh, enjoy ourselves, be frivolous, let it all go."

"Exactly," her son added. "Why limit ourselves to holidays to feel good?"

Looking for inspiration? Here it is. He can't be more than 20 years old. And he is just such a beautiful person, with joy in his heart and soul. And he has 5 weeks of radiation, but along the way, he is being loved, admired, adored by everyone, who is blessed to meet him and his mother.

Everyday, we see the man with the prosthetic arm. Everyday, we see the elderly man, with a long pony tail.

Everyday, we see the man, with a grey beard and hair, waiting for his wife, reading his Bible. It is so worn, with many folded pages, and bookmarks. When we first met, I asked him if he had finished his book, not knowing what he was reading. He answered, "No, we can't ever finish this book," as he lifted it to show me it is the Bible. His wife has brain cancer.

Everyday, we see two elderly women, one in a wheelchair, one pushing the chair. The love between them is radiant. They are both frail. Yesterday, Jim opened the very heavy door for them, and today, as they were exiting treatment, I jumped up and opened the door for them.

They are always so grateful, and today, I said, "I had two sons in wheelchairs, and I know how difficult it is to manage these heavy doors. I hope I will be here the next time to help you." They smiled, then I added, "I use to use my rear end a lot to hold door open, but these doors won't allow that. And I couldn't do it now anyway."

They laughed, and we all agreed to try to have a good weekend, two days off without radiation treatments.

I just love every one of these courageous people we are meeting. And their loved ones, supporting them. In a 5 day week, we have bonded, shared our journeys, supported each other, shown positive attitudes, cried with each other and laughed out loud together. We are loving each other through the most difficult and frightening journey any of us could have imagined. It is beautiful, and I will never forget these amazing people. Ever.

Donna ~

Your weather sounds alarming too. Yes, California is on fire. Thankfully, all 3 fires in our city were controlled, but more fires are cropping up in the state. I cannot imagine how the firefighters are managing all of this. We only have so many resources, and I'm sure by now they are strapped.

A flare gun was found in the vicinity of the fire closest to our home, which is suspicious.

John's daughter drove us yesterday and today, since John is out of town. She is a sweetheart, just like her parents and family. Jim teased her both days, and I had to intervene and tell her that he's British. This is really wonderful for us to be able to spend a few alone minutes with her in the car to get to know her better. She's a busy 17 year old, so this is a blessing for all of us. Like her dad, she has a great sense of humor, and she is open and honest.

I remember the first time she met Jonathan a few years ago. She was a little shy, but when she saw him, she brightened up. Jonathan flashed his sweet smile at her, and she relaxed and talked to him about basketball.

In other news, today was a difficult day for me, as it is now November, and both Jonathan's and Michael's birthdays are coming up. On both of those days, we will be at the rad onc center, with our dear community. I may be the one crying then, but I pray to be strong for Jim and all of them.

Jim's Ascites is still in full force, and his gut is still 40", but his bowels have been slow, and he is refusing to eat, because it causes pain. He is taking TUMS, which does help a little. He's finally had a couple of good BMs, so I'm hoping that he'll be able to eat more this evening. I am nagging, he thinks, because I worry about his nutritional status. Well, yes, of course, I do! I'm a Mother, that's what we do! Eat something! Anything!

So, I had a good cry in the shower this afternoon, dried my hair, put on my makeup, got through the day, and I'm grateful for every moment.

Counting our blessings every minute of everyday. Praying for all along the way.

We love you all and send you healing, positive energy and prayers for you and your loved ones.

As I wrote that last sentence, a helicopter flew over our home. I can hear more in the distance. Let it just be patrolling. Please. Thank You, Lord. Amen.

Love & Light,



Rose

[jingle]

Rose -- I keep you and yours in my prayers.

[Earth Mother 2 Angels]

Tomorrow Is Another Day

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

jingle ~

Thank you so much for your prayers. They mean so much to us. I pray that all is well with you too, and I love your Halloween tradition of giving to others. Bless You.

The weekend has been quiet generally.

In between Jim's naps, I've been able to do several loads of laundry to prepare for the week ahead. Clean towels, clean clothes. I think the washer may have a problem, and that makes sense, since it has outdone its duty for us for many years. I just am not in the right frame of mind to get it repaired and certainly not to have a new one.

I have a cart with 3 hanging bags, which I used for Jonathan's laundry. I finally placed a blanket over the top of it, because it's painful to see Jon's laundry. And I have to address the urgent laundry for Jim and me.

Bathrooms are clean and rugs/stairs are vacuumed. A little here, a little there, and that's all that I can do.

Ascites, probably diverticulitus, probably a colon wall thickening, probably constipation from Codeine, even though Jim takes very little, are all wreaking havoc on his appetite and ability to consume nutritional meals. I'm concerned, of course, but he keeps assuring me that he's getting enough nutrition. He's not. But he can't.

And we both know that G tube feeding is out. That's just more liquid in the gut, and it was Jonathan's doom. Jim wants to eat, but his gut rules. Soup and toast and a gulp of Orgain. Tea, decaf espresso.

We have beautiful organic asparagus in the fridge, beet root, living butter lettuce and organic greens, avocados, carrots, the makings for tacos, spaghetti, fajitas, potato salad and veggie dogs or Tofurky beer brats, mashed potatoes, peas, all of his favorites. But Jim can't handle any of it. I threw away so much food today cleaning out the fridge.

THE iPAD

I'm glad that I got the iPad as a back up for the computer, because it seems that its true purpose, to give Jim access to the internet, is not important to him now. I've tried to interest Jim in stuff on Netflix and Amazon Prime, which I'm sure he'd enjoy, but he has no interest. He's watching a new cable channel called Motor Trends, golf, soccer, football, and ancient TMC movies.

Yesterday, I placed an Instacart order and half way through I lost my internet connection. So I turned to the iPad, and it worked, until I couldn't figure out how to refresh it, or whether I need a special app to get updates on my order and communicate with my shopper.

THE CAR

I've given up on buying the car. I don't know what I'm doing, and we're in the middle of a crisis, and I'm melting down on a daily basis. John is happy to do this for us as much as he possibly can, and I think he knows that I'm on the edge. Or he will when we see him tomorrow for Jim's second week of daily zapping.

In so many ways, I feel rough and raw, inside and out. The sands of time are slipping through my red, chapped hands, and tears just spill from my eyes. I don't even realize that I am crying.

Scenes from Jonathan's large collection of action/adventure and Marvel movies flash before me sometimes. Like I am holding on to a flaming rod or climbing up a treacherous mountain or jumping over a cliff to another cliff.

I'm trying to save my husband. And find my children. But I'm not a movie superhero, and the endings aren't always happy.

That is where I am today. Tomorrow is another day.

We pray for you and your loved ones and thank you so much for your love, prayers, support, and healing energy for us.

Love & Light,



Rose

[Earth Mother 2 Angels]

In The Room

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

John was a little early today, so we waited for about 20 minutes for Jim to go in for treatment. We were alone in the waiting room. After Jim was taken in, the waiting room began filling up. I was on the opposite side of the room, with my back to the others.

I was watching Ellen on the TV on that side, as she reunited a pregnant woman and her husband, who has been stationed overseas. Every time the promo for the segment came on, tears began gathering. No, I have to hold it in, I told myself repeatedly. Then, they were reunited, and the tears just did their own thing. I have no control over them it seems. And then, the couple was given $50,000. Oh dear, here go the water works.

So, I didn't turn around and engage the others in the room. I am depressed, and none of them needs to see that. They were laughing and enjoying the camaraderie. I didn't want to intrude on that beautiful vibe.

Jim exited as the tall young man, who wore the inflatable dinosaur costume on Halloween, was going in. Jim greeted him with a smile and a fist bump, as he said, "Go get 'em, buddy!" Once in the waiting room, Jim greeted the others, "Hey Folks! How's everyone doing today?" They smiled and said, "Ok," "Not bad" and "How are you?"

When I joined Jim, I greeted everyone, "Have a great evening," I said feeling a bit phony but meaning it in my heart. Of course, we all want each other to have a great night, even if that means it's only a little better than last night.

As we sat waiting for John in the corridor facing the drop off/pick up/valet zone, the gentleman with the prosthetic arm walked up to us. Big smiles and friendly greetings.

He walks the corridor, because he has to drink a lot of water before his treatment. The water gives him gas, but the walking helps to control it. After he left for his walk, I said to Jim that we should ask these people their names and give them ours. So when the gentleman came back toward us, Jim stopped him, "Say, what's your name? We've been seeing a lot of each other and don't know your name."

"Jose," he smiled, "And yours?"

"I'm Jim, and this is my wife, Rose."

Jose grinned, "Rose! That is a beautiful name! In Spanish, you are Rosa, like my mother."

More laughing and joking, and then he was off for the rest of his walk, as John drove up.

All around us are people, who have tremendous courage, grit, determination, and a wonderful perspective on life. They count their blessings. I'm in awe of everyone we have met as I've been traveling with Jim on this part of his journey. The folks in the infusion center, the folks in the rad onc. And everywhere in between.

Jim told me that the young man has a long scar on the side of his head, and that he has seen the young man's mask getting readied after Jim's treatment concludes. So, he has brain cancer. He's probably over 18, otherwise, he would be treated at the Children's Hospital. But I doubt that he's much older than 18.

He's so sweet, cheerful, exuberant, positive, and beautiful. Why does he have to have brain cancer? It's the same question I've asked for 50 years about Jonathan and Michael, and that many of us have asked about our precious children. Why do any of them have to have complicated neurological disorders?

JIM'S LOSS OF APPETITE

It's worsening. He finally had a bowl of soup and two slices of toast a while ago. He is so fatigued from the radiation on top of his usual fatigue. His gut is huge, filled with fluid. He's thirsty, so he drinks too much water, tea, and yesterday, decaf. He's almost finished a full Orgain shake for two days in a row.

I'm asking him periodically if he's hungry, and he isn't. I worry about his nutritional status and that annoys him. He thinks that I don't understand that he has no appetite and no room for food in his flooded gut.

Of course, I completely understand this. This is what Jonathan went through from 2012 to 2019. And every time that we had to adjust his G tube feed rate, I worried about malnutrition. Both Jonathan and Michael had bouts of malnutrition. To me, as their Mother, that diagnosis is failure.

Nutrition is vital to healing and to strength. Jim needs nutrition, or he will wane and be unable to continue his radiation treatments. I don't know whether the treatments are the reason he is losing his appetite, or if it is the Ascites, but we will discuss it with Dr. S tomorrow after Jim's treatment.

Jim insists that he wants drainage again, but those 2.5 liters of fluid reappeared in less than 24 hours. What was the benefit? If that happens every time, it's a lot to go through for less than 24 hours.

Jim even suggested that he could go to the hospital to have the drainage, then go in for radiation afterwards. I just looked at him and shook my head. First, the drainage took 2 hours. Second, the hospital and the medical offices are a long walk. Neither one of us are up to that. Third, both drainage and radiation are trauma. You don't want to mix them. That's why we had several days between the drainage and the first zapping.

Most of all, it didn't work!

BMs are few and far between, although he did have good production a few days ago. Again, like Jonathan, sometimes it worked, sometimes it didn't. And, the less food we take in, the less waste we produce.

Of course, he also has diverticulitus, colon wall thickening, and who knows what else going on in his gut and intestines.

I will take a list to present to Dr. S tomorrow about what is happening with Jim. He is attentive, and I feel that he will listen and guide us through this somehow. I have to believe that. I need professional guidance here. I'm not a doctor or a nurse. I need information to help me take proper care of Jim.

Okay, that's the end of my therapy session. I see my time is up! Thank you for listening and caring and supporting us.

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

Love & Light,



Rose

[Donna Thomson]

My dear Rose,
I feel your exhaustion and despair in your words. But I know you are trying so, so hard to stay positive for Jim. Yet you see him filling with fluid, losing his appetite and then trying so hard himself to be cheerful. It is all too hard. No wonder you wept watching that couple on Ellen! I remember in very difficult times with Nick's health feeling like my skin had been turned inside out - everything 'normal' in life hurt. If people were abrupt or angry, I would burst into tears. If I witnessed another family going through something hard, I wept. I understand this rawness. I just wish it wasn't so - any of it. I love you and pray for you and Jim every day - xoxo Donna

[Earth Mother 2 Angels]

Blood in Urine

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

For the next installment in our saga ...

BLOOD

Last night at 10 p.m., Jim told me that he was peeing blood and clots. It started soon after we got home, but he didn't want to tell me, because he didn't want me to worry. I told him, "I am in a permanent state of worry, so please don't hold back anything from me. Of course, I'll worry about you peeing blood! If I was peeing blood, would you worry? Yeah, of course you would."

First thing this morning, I emailed Dr. K on the health portal, and I called Dr. S's office to ask if we could see Dr. S before treatment, instead of after treatment today.

Dr. K replied about 1 p.m.

Liver is causing the increased fluid retention (Ascites)
Increase Lasix to 40 mg a.m. and 20 mg p.m.
Tell me if you want another paracentesis
Blood draw to check coagulation, electrolytes, CBC/CMP
Urine sample to check for occult infection ("unlikely, but let's check")

He suggested Nancy do the draw, but scheduling her visit, when we have to go to radiation every day is impossible. So I will call Dr. K's office and ask that he put in an order for a draw at 3 p.m. tomorrow. We can go up to the 3rd floor, get the blood draw, then back to the first floor for rad onc treatment at 3:30. This way, we'll have more timely results also.

IN THE ROOM

We arrived early, and the room was full. We sat near the young man and his mom. His name is Luke, and he's 20. In July, he had his first seizure. He is on Vimpat. In August, he had brain surgery, and today, he finished 5 weeks of radiation.

We are so happy for them that treatment is over, but we will miss them. Mom, Jolette is truly charming and positive and has a great sense of humor.

I explained that we know a lot about seizures and gave a very brief synopsis of Jonathan's and Michael's lives. When she said Luke had been on Keppra first, I asked if he had mood swings. She rolled her eyes, "Oh yes! It was terrible!" She was so sad for us in losing our boys. Everyone, who hears our story, reacts the same way.

Across from us were Mark and his wife (whose name we've yet to learn, but will fix that tomorrow). Her skin cancer attacked her internally, a rare occurrence. She's had surgeries and now radiation, because none of the immunotherapy or chemo are appropriate treatments for her. Her mouth is sore, and she has no taste buds. She also has lymphedema. Mark carries his Bible with him everywhere.

The wife of another patient, who was in getting treatment, but who we haven't met before was listening to us carefully.

Then, Jim pulled out a bottle of Orgain, the vegan protein drink, and handed it to Jolette, after Luke went in for his treatment. Thus, began my sales pitch for Orgain, and everyone was interested. Jolette took a photo of it on her iPhone and said, "If we can order it on line, Luke will be all over that." Mark's wife asked if she could have the shake, and Jolette said, "Of course! Luke will get some by tomorrow. You know him!"

Mark's wife, poor darling, can't eat or enjoy meals. Orgain has 21 gms of protein and is full of cancer-fighting nutrition. It was developed by a physician, who is also a cancer survivor.

She was thrilled! I hope she can drink it and enjoy it. I want to just bring a case in for them, but the cases are really heavy.

It just occurred to me. What if we buy a few cases of the shakes and send them to the oncology and rad onc departments for the doctors, nurses, nutritionist to offer to patients as a supplement in lieu of Ensure, or Boost or other chemical supplements? Hmm ... A way for us to give back and to help others. I'm going to call the nutritionist and run this idea past her to see what we can do.

After Jim was called in for treatment, Mark and I chatted. We covered a lot of ground. He mentioned his wife being in the hospital overnight after her surgery, and he said, "That was a long night."

I told Mark that I used to know every nook and cranny of the hospital, because I spent so much time there with my boys. Jon had a 45 day stay in ICU. The next year it was 40 days. I was helping people in the hallways, who were lost, to get to their destination, no matter where I was in the hospital. I was there so much, the cafeteria gave me an employee discount. Everywhere I went in the hospital, I ran into someone, who knew me/us. Nurses, aides, doctors, therapists, housekeeping, etc.

Mark shook his head and sighed. "Wow. That's a lot. I can't even imagine what you've been through. I know what you're going through now, though."

Mark's wife has 30 rounds of radiation. Jim has half as many. Today was her 14th round.

Mark said that they've made so many friends in the room over these 14 days, and he will miss Luke and Jolette. They sure brightened up the room. He said, "It's kind of a strange place to make friends."

I responded, "It's the perfect place to make friends."

Luke and Jolette left joyfully, but not until they had hugged everyone and wished us all well. As we waved goodbye to them at the door, I said, "God Bless You!"

"Thank you! God Bless All of You!"

Indeed. It is the perfect place to make friends. Friends you will always remember, even if you never see them again.

DR. S WEIGHS IN

Pre-treatment, the nurse weighed Jim then sat with us in the exam room, while we told her what's been happening with Jim. She listened and asked questions, while multi tasking on the computer.

When Dr. S entered, I was once again stunned by his youth. Most of his patients, like us, could be his grandparents.

He began, "So, let's talk about this blood in your urine. I can triple guarantee that it isn't related to your radiation treatment on your lung. And, this is not my area of specialty, of course, unless you want radiation on your bladder, which at this point doesn't seem necessary. A 10 mm mass is so small. It could be anything."

He looked at the CT scan of Jim's bladder on the computer. "Yeah. It's really small, and I don't see anything there concerning as far as needing radiation now."

I told Dr. S that I had emailed Dr. K, and I gave him the print out of Dr. K's response. "I trust Dr. K's judgment over my own here, and I do agree with everything he has suggested. Let's have him coordinate the blood work and UA. Meanwhile, if you need to take a break for paracentesis, we can do that, but if you can hold out until after treatment, that might be worth trying."

He said that everything is going well with Jim's treatment and that the treatment is right on target every time. Very little readjustments are needed, because all of Jim's markings are perfect. So, in a way, he needs to have the distended gut to get the treatment. Or at least it is helpful right now.

Jim said, "I trust you implicitly Dr. S," as they shook hands.

He's kind, caring, and enthusiastic about his profession and helping his patients. He also has a sense of humor. That's quite important to us.

So, we'll see what tomorrow brings.

Tonight, we pray for no blood in Jim's pee and sleep, as he is quite sleep deprived right now.

Thank you all for your love, prayers, support, and constant friendship. We love you and pray for you and your loved ones.

Love & Light,



Rose