Ten Years with Chemo – Five Years Without

Sunset for Joe and Jane

The pandemic was everywhere. Joe, Jane and I had been practicing social distancing but our friendship meant that we would still talk. It would just have to be outside from 20 feet away. This afternoon had Joe sitting in his car with the window down while I lounged on my grass just passing time. I suddenly remembered Jane’s cancer.

“How is Jane doing with chemo?”

Joe paused for a little too long and composed himself.

“Not good.” Was all he could get out as his jaw tightened up and he looked away, hiding his face.

“What do you mean? Is she still getting chemo?”

“She has been but the doctor just had a conversation with me today. Not good.” He repeated.

“They told me that she could have ten years if she does chemo but it would be bad. If she doesn’t do chemo she gets five years.” I could see the strain on his face.

“They want me to decide because she can’t. She still can’t remember what she ate for lunch. I have to tell them what I want to do.”

“I’m glad I’m not you except that Jane is awesome even if she can’t remember things. You were lucky with her. I don’t know what I would do. How bad is it going to get?” Boy did that sound stupid. One side of me was jealous of their 58 year marriage. How amazing would it be to have been that in love and committed to each other?

“Bad either way. The chemo makes her lose her hair and really sick.  Without chemo it will get worse and she will hurt but not be as sick. With her forgetting everything and asking me stuff over and over again what are five extra years?” I think he had decided already.

I watched as a mother bird flew towards the nest she had built under my garage overhang. I knew he had to talk to someone. I also knew that with the Covid-19 stuff we hadn’t spoken much lately. I wish we could, but the reality that I am over 65 and so are they meant it was really important for neither of us to get sick. Getting sick with Covid-19 might be an immediate death sentence. The robin landed and began dropping a worm into one of her newborns. Life goes on one way or another.

“I wish I could help but I’m really being careful with the quarantine.  I hope you two are too.” I saw that he didn’t care about living.  He didn’t see any good future now that Jane’s mind was leaving her body. She looked as good as ever to Joe but slowly her companionship was disappearing. Joe would not last long once she was gone. He would not want to live one day more than she did. I knew his plans and hoped to be able to prevent them.

“Do you want to come for dinner this week?” Joe was really dismissing the reality Covid-19 had brought on us. Or maybe he just didn’t care one way or the other. I did care and wanted every day I could get.

“I’ll see if my daughter will let me but I don’t think she is going to let me out.” My daughter had been staying with me and holding me accountable. She was a good excuse and I was not going to take any chances.

“Alright.” Joe started the car. “Maybe we can do your next door neighbor’s roof. She has a big leak.” Joe wanted everything to go back to yesterday. No one can turn back the clock no matter how much Joe wanted to pretend everything wasn’t happening.

“See you later.” I had to let him go without my help. Covid-19 had messed up a lot of friendships. And changed all of our lives. I could tell that Joe knew he and Jane’s lives were already written and nothing was going to change that. His acceptance was painful to me and left me wondering what I would do when it was my turn.

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Strange Rashes and Other Medical Mysteries

Here we go again. I was making one of my visits to see if Joe could help me put in a new toilet when he asked me to do him a favor.

“Would you go in and talk to Janet?” Joe was hunched over giving me a blank stare from his unshaven face. I knew his kidney cancer was cured and I would give him a break from dealing with Janet.

I slid the glass door open. “Hey Janet. How are you?” I gave my regular hello.

Feet Rash and Swelling

“Well, I don’t know. What do you think?” She pointed down to her feet on the floor. They were covered with a rash and really swollen. I almost couldn’t look.

“Wow! They’re really swollen. You should elevate them. Put them up on the couch so I can see them better. ” I was hoping that it was something simple but when I looked they seemed really wrong.

“What did the doctor say?” I asked.

“Well it started two weeks ago with the rash and I went to my regular doctor and she gave me this.” Janet handed me a Prednisone cream.

“It hasn’t helped at all. It’s actually worse now and they really hurt. I can barely walk. ” Janet’s words triggered a flash back to Joe dealing with his own kidney cancer’s side effects along with Janet’s issues. I pushed those thoughts out of my mind.

“I’m going back to her on Monday. ” Janet finished.

“Are you taking any pain medicine? Could it be the chemo?” Two weeks with medicine and getting worse?

“Am I on chemo? I can’t remember what I’m taking. Joe knows. You can ask him. I don’t remember what I had for lunch. I think I had lunch.” And Janet looked at me as she broke out in a giggle. A great side effect of no memory, she forgot to worry.

Joe had followed me into the house. “I’m taking her back to the doctor on Monday. I hope they figure it out.” Joe was moving towards the sink to get a glass of water.

Joe continued, “I think that doctors just see an old person and don’t even try. They just say let them die.” For a split second I imagined he was right.

We chatted for a minute about nothing and then I went home.

About a week later on Tuesday evening I walked over to Joe and Janet’s. “What happened at the doctor? Did she give you something new? Is it from chemo?” There was a pile of medicines on the coffee table next to Janet.

“I’m wondering if it isn’t a side effect of the cancer treatments.” said Joe ignoring everything I just said. It was a week later and Janet’s rash and swelling had gotten much worse. Her foot had a deep crack in it. And the pain was worse.

I said, “I hope they can figure out what it is. I know that as we get older all kinds of strange things happen to our bodies.”

“I’m taking her to a dermatologist Monday. If they don’t help I’m going to go to the hospital.” Joe seemed to shrink as he spoke.

“You know this is my vacation week. I will be gone to the beach so I’ll see you when I get back. If anything bad happens will you call me?” I turned and walked home under a cloudless night sky.

A week and a half later on Friday I walked back over to Joe and Janet’s to check on her and tell them about my week. I hoped Janet was better.

“How was the beach?” Joe asked.

“It was great. The kids came and the weather was perfect. How’s Janet?” I really wanted to know.

“She is doing better. They took her off chemo. They think it was a reaction to chemo. Go on in and say hello.” Joe was fiddling around in his tool room.

I knocked on the sliding door and walked in. “How are you?”

“My feet are still swollen and hurt to walk on. Where did you go? I haven’t seen you in a long time.” Janet could not remember so I retold her “I went to the beach with the kids.”

“Your rash is almost gone and your swelling looks much better. Joe said they took you off chemo.” I noticed her dead skin was peeling off in sheets.

“I don’t know but if Joe says so that’s probably right.” Janet seemed so comfortable with never knowing what was going on. She did always remember me and Joe so that was good.

Janet started picking at her feet and peeling skin off. “I’m going to find Joe.” I headed out the door so I didn’t have to watch.

And then it hit me like a ton of bricks. Janet was happy because she couldn’t remember not to be. It was Joe that needed the help. I should have been asking Joe “How are you?” and worrying about how he was doing. Janet could not even remember if I asked how she was.

Joe, on the other hand, was fully there and saw a woman in his house that looked exactly like the wife he loved. Joe did everything for her because she couldn’t. Janet was still beautiful with the same figure as when they met 60 years ago. But she wasn’t home. And that was tragic.

Skin Conditions in the Elderly

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Joe, Janet, and Memory Loss

There was no mistaking her beauty. At 78 Janet was in college shape and her engaging smile drew you to her. Her figure was enticing and she moved and laughed like a woman who had provoked males her entire life and thoroughly enjoyed the attention. And she could not remember what she had eaten for lunch or who just called or where she went yesterday or if she was on chemo therapy. She was completely free of pain or anxiety concerning her newly elevated cancer markers and the subsequent weekly chemo. She never remembered the ongoing side effects of chemo allowing her to remain emotionally unaffected and free of pain medication.

Janet and Joe have a Beautiful Garden
Janet and Joe Have a Garden

Joe’s cancerous kidney had been removed and he was slowly returning to his new normal. A full recovery with no chemo was his future. Kidney cancer is very often healed by simply removing the infected kidney without any additional treatment.

“I have to do everything for her except washing her.” Joe was sharing his frustration with the woman he had loved for 60 years. I wondered why he didn’t wash her too.

“You know she never said no to me. Never.” He had once privately disclosed. Were his memories of their love manifested as physical intimacy too painful?

“She asks me the same thing over and over again. She just can’t remember. I get mad at her and I know it’s not her fault.”

“I will come by and sit with her later.” I knew he needed a break from his caretaker role to refuel his emotional storage tanks. And I enjoyed talking with Janet.

“Where did you stay on your trip to Savannah? With friends? A Hotel?” I wanted to know how her 60th High School class reunion had gone.

“I know Tom has an extra bedroom so maybe we stayed there. It could have been a hotel. I can’t remember.” And she laughed happily and somewhat mischievously. I was glad she was not in one of her angry moods. Janet could be viciously angry about her inability to cook, drive and do any of the things she used to. She missed her old lifestyle when she could remember it.

“By the end of the year I will need to put Janet in a home. She is getting worse and worse. I can’t take care of her the way she needs it.” His overwhelming sadness at the living loss he was going through brought two different feelings. ? I was very sad for his living loss and incredibly jealous that he had had a 60 year life with a woman he unwaveringly loved.

 A living loss where your wife’s soul left her living body might be worse than sudden death. You could see your beautiful wife looking as great as ever and know that your partner had left the body. The person you had shared your day with for 60 years was no longer there.  Death would be a welcomed event but I wondered if Janet passed would Joe be right behind her.

As we stand talking in the front yard I can’t help noticing that Janet’s incredible garden was in full bloom and weed free. This was the same garden that had gone to waste last year during her cancer recovery.  Now the garden was clearly being cared for.

“I guess Janet is feeling good enough to work on her garden again.” I assumed and hoped she was.

“She loves that garden and worked really hard for it.” Joe seemed reserved and sullen as he spoke.

“Hi Janet.” I welcomed Janet as she joined us.

“You are back to work on the garden again. I thought I had a chance with my garden but I will never catch you.” I was teasing but also somewhat jealous.

“I can’t work on the garden. I don’t know what is going on with it.” Janet balked at her memory being called for. Her head was shaking as it often did when she felt stress.

“Joe, you are doing it aren’t you?” A wave of understanding washed over me as Joe’s love for Janet burst into the limelight. He was working the garden to hold onto that part of Janet and because he knew the joy it had brought her.

Make sure you check the links below. Take the online memory test.

When It’s Time for a Nursing Home

Memory Loss – When to Seek Help

Online Memory Test

A Stressful MRI to Check for Brain Cancer

Hospital Admissions
Hospital Admissions

A month after Janet’s cancer was removed Joe got gangrene. In the process of curing the gangrene it was discovered that he had kidney cancer. I guess the kidney cancer had compromised his immune system and allowed the gangrene.

Possible Complications

Joe had terrible migraine headaches too and it was decided that before the kidney was removed he would have an MRI brain scan to see if the cancer had spread. As my neighbor for 30 years, I had all kinds of feelings and worries about them and what I could do to help.

Joe’s doctor arranged a brain scan two weeks into the future. When Joe asked why he had to wait so long the doctor explained that there was a shortage of machines. Two weeks seemed way too long. Why weren’t there enough machines?

Joe’s brain had him thinking the worst. What would Janet, suffering from severe memory issues, do if he had brain cancer and died? Would it be a horrible death?

Joe opened up to me. “I’ve had a good life. Better then I expected. I was the luckiest man on earth to have gotten Janet.” When he said “I don’t care if I die.” I told him “Yeah, but I do. And what about Janet?”

CBD Oil to The Rescue

His migraines got worse and his doctor told him to go get CBD oil for his head pain and anxiety because the drug store pills weren’t working. I went with him to a ‘vape shop’ and bought some with 1000mg in the bottle. It didn’t do much to help and his pain surged. I looked it up and decided that we needed to get some really strong CBD oil and once again we were back at the vape shop.

This time I asked for the strongest CBD oil he had. The owner reached under the cash register and brought out a bottle with a dark colored liquid that said 5000mg. Joe said it was worth a try and he dumped half a dropper under his tongue. Ten minutes later he had his head back with his eyes closed and was obviously relaxed. Joe said that this made it bearable where none of the prescription pain killers had worked. CBD was it!

First Attempt for MRI

Two weeks and a bottle of CBD oil and finally Joe was at the hospital on the MRI table sliding into the MRI’s tunnel. The waiting and claustrophobia were just too much and Joe had a panic attack. He needed sedation to calm him but on Wednesdays they did not have anyone available so he would have to reschedule his MRI.

The soonest they could get him back was two more weeks. Two more weeks of anxiety from not knowing what was wrong with his brain. It would be four weeks since his diagnoses and four more weeks for the kidney cancer to grow.

Second Time MRI – Success

Another bottle of CBD oil and two weeks with the fear he had brain cancer found Joe back at the MRI hospital. This time I went with him because you have to have someone drive you home if they sedate you. Much to our surprise when Joe went to check in they told him he was not on the schedule. The check-in person graciously called Joe’s doctor and was told by the doctor’s staff that yes they had made an appointment. Check-in then called scheduling to see what could be done and was told that no sedations were performed on Wednesdays and therefore he would have to reschedule. Didn’t anyone know about the Wednesday rule before scheduling Joe?

Joe, to his credit, was trying as hard as he could to control his anger. Joe was given the phone to speak with scheduling. The scheduler decided that Joe could wait two more weeks and Joe replied, “In two more weeks I might be dead.” Everyone in the room was listening when the scheduler decided that she did not like Joe’s comment and hung up.

The check-in people immediately went to work as advocates for Joe. One called the scheduling supervisor to ask why one of their people hung up ‘on their patient’. The other started calling in favors to get personnel to allow Joe to have sedation and to fit him in to the schedule. The hospital workers were incredible and showed tremendous concern for Joe. Joe got his brain scan and now has to wait for the results.

Summary

Even though the administration part of the hospital was a mess the medical personnel were miracle workers. Good with the bad. It is important to remember that there are concerned people to treat you and there are ones who just go to work and do not understand that no one is at the hospital because they wanted to be there. It might not be right but it is really important to hold your temper when things go wrong in the medical industry.

As an update, Joe’s brain scan did not show any cancer so now he is going to have his cancer kidney removed. Make sure you follow the links below for more information on all of this.

Great Video Showing MRI

Chronic Headache as the First Symptom of an Undiagnosed Renal Cell Carcinoma

Neuro Imaging

Cancer Catches the Church Lady

On a cold October night my doorbell rang. Not a usual occurrence. It was Joe, an aged, very hard headed, multi gun owning neighbor. I had known him for the 30 years I had lived in my house but this was the first time he had ever stopped by after 9:00pm.

Married for More Then 50 Years
Married for More Then 50 Years

“I need to talk to you.” He entered the house. I motioned for him to sit but he just paced back and forth.

“It’s Janet. She has cancer and I don’t want to live if she is gone.” Janet was 77 and Joe was 80. They had been married for over 50 years and they still loved each other. John would go after anyone who made noise or cursed within Janet’s hearing distance. I mean he had actually brought out a pistol and threatened a young man who was drunk at a party a few houses from their house.

“Just what type of cancer does Janet have and what did the doctor say about it?” I became worried that this could have a bad ending. I didn’t believe it would happen this week or this month but Joe’s thinking was not good.

“She has female cancer and she needs surgery and then chemo therapy. I have to take her to her doctor next week and then they will schedule surgery.” He kept pacing and I offered him a drink. Not alcohol because Joe does not drink. And Janet had been the administrative assistant at the nearby Catholic Church for almost 30 years.

“What can I do to help?” I asked with what I must admit was sorrow and fear about their situation and mine. This was uncharted territory and while I appreciated that Joe was trusting me with this and felt a strong and trusting bond with me, I did not understand my own feelings. What if she passed away?

I decided to just let him talk and listen to what he was going through. I did not offer any advice because frankly I didn’t have any. I did believe that going to the doctor and doing whatever they asked you to do was a good thing. I needed to go online and see what I could learn about it.

I made up my mind that the next day I would go and visit with Janet and see how she felt. I wanted to help but felt lost. I would just have to ‘show up’ and listen. Thankfully there is nothing to prepare you for this so I guess I would just do the best I could.

I am going to post more as this continues down its path so stay tuned. Don’t forget to check the links below for more helpful information.

Adjusting to a Spouse with Cancer

Keeping it Together When Your Spouse has Cancer

What to Say to a Friend or Coworker