Advice on what now...

 Actually, I don't have any advice. Period. 

Everyone says: It will get better. It will.

Alert.

It hasn't. IF it wasn't this time of year, perhaps I could distract myself in the long dark cold evenings or I could distract myself during the long ... cold...dark mornings. 

My saving grace is forcing myself to go do things when it would be so much easier just to wrap up in a blanket with Charlie at home and watch the wall do nothing. 

This is called depression and it is classic. However, it did not hit me hard until 3 months later. I have a feeling that I am not the only one to go through this, but at night with just the soft light coming from the Christmas Chair, it feels as though I AM the only person in the world experiencing this.

In fact at 3am, 4am, 5am...I know I am the only person in the world experiencing such harsh, painful, and gut wrenching grief. No one else in the world knows what it is like.

Charlie sits up and stares at me. He can only sigh and move closer. My stomach aches, my eyes burn, my throat tightens. Then nothing. I am numb. I am tired. I am angry, sad, frustrated all at the same time. How on earth can that even be?

Yesterday was so happy, so fun, and so energizing. The dark morning is so wretched. I get up, light the scented candles, and made some decafe. 

I stop at the sink and look at the dishes I didn't wash last night. My first thought is to throw the dishes in the trash. I know I'd regret it so I stack them into a sink tub to do later. Maybe the dish fairy will show up and clean them. I don't even want to look at them. For some reason I hate them. 

The 4 dishes and 2 cups show me that only one person lives here. 

Stupid.

I want to kick something, but don't.  I feed Charlie and he gobbles up his breakfast and stares at me until I realize that his grunts are for his morning chew treat that is supposed to clean his teeth.

Good Dog. He makes me move from where I was glued to.

~~~~~~~~~~~~~~~~~~~~~~~~

I finally decided that I was going to force myself to go to the gym and work out with my gym pals, my support group. We gals wore our Friday shirts that says CrossFit Legends-I'll be there for you T-shirts.

We'd done a hard cardio workout and then Deadlifts which are everyone's favorites. I did a life time achievement lift. I weigh 118 lbs and lifted 160.  The coach was exuberant as were the others. Oddly enough, I wasn't, I just shrugged.

Then I helped Charlene who was having trouble with stretching out afterward. Julie came up and hugged me telling me that her new cancer treatment was hopeful. Pat came up to me in the parking lot with a meal of Chicken Gumbo and Rice that she'd made and handed it to me. She thought a homemade meal would be good for me.

When I got in the car to drive home, I didn't want to kick the dog or scream at the world. Even though there was freezing drizzle, I felt oddly comfortable and pleasant.

Then came the phone call from Olive. She apologized and said she had a BIG ask. What was I doing for Christmas Week?

I immediately told her I was available for whatever she needed. Nate was going to have his second round of 5 days of chemo from the 22nd to the 26th. I said I'd clear my schedule and there it was. I could watch her 2 and 4 yr old boys for the week while they did the infusions.

She apologized for the Big Ask during Christmas and I said I that I could think of no better way to spend the Holidays but with children. 

So, my what now advice? I don't have any. But when others reach out, it makes life a bit better.

No one really knows how much they helped me on Friday. But I do.

Up and Down and All Around

Sometimes our lives are funny and sometimes sad.

Sunday I'd asked Rich if he minded that I go to KVR [Kickapoo Valley Reserve] and take Charlie for a hike on the shorter trail.  
He huffed and puffed over his morning coffee, as if I'd just asked him if I could cut off one of his arms or legs. 

"How long will you be gone?"

Me: Well as long as it takes to drive there, hike, and get back.

"How long is that?"

Me: There is a sudden realization that now I have to give times for him. Just like this weekend when I walked along the north facing hillside while he was napping. I had the 20 questions. Of, How Long, Where, When, What are you looking for?

Me: Oh it takes about 25 minutes to get there and an hour or so to walk the trail, it is 1/2 mile long, straight out and back. I should be back before lunch and probably right after or at the end of your morning nap.

"I don't always take naps."

I nod, but don't answer and I wait.
He sighs and sips his coffee. 

Me: Are you afraid of me leaving the house to do things?

"Well you always get to do what you want, you are going to do it anyway." 
His tone was that of a petulant child.

Me: Well, what would you like to do? Want to come along for a drive perhaps? Would you like to drive to the river and check things out?

"No." He stares out the window and I see the blankness. He finally says to me...
"Fine. Go."

Me: Okay. 
I pack things up and head out the door. My hike is enjoyable and for a while I forget about all the things I need to do. I promise myself NOT to look at my phone to keep track of time and I hide it in my backpack. Charlie and I take our time walking the length of the trail and I pick up the pace on the way back.

On the drive home I think about Covid. I think about masks, I think about risks, and what I need to do to help keep him safe. I think about Rich's daughter and family who have decided not to keep in contact with Rich because we are adamant about safety and vaccinations. Besides, she is too busy. Too busy for a vaccination, too busy to call to talk to her father, too busy period. And I think a moment about that. 

Then I hit the button on the dash for Pandora and enjoy the rest of the drive home with the music blasting and Charlie sleeping in his 'car seat'. 

Severe cold and Depression Suck

It used to be that you didn't dare use the word 'suck' in your writing as it would offend someone, somewhere. However our world has changed a bit now hasn't it?

I contacted ADRC which I said I would but only because things sort of came to a screeching 'whatchyamacallit' this week.

The cold weather has taken its toll on Rich. He has such a hard time with subzero temperatures. I've let him do what he could so far this winter. However since I knew things were going to get very cold, I moved the second batch of cattle into a larger area and we put out a bale feeder. Now they can all feed at their comfort and drink from one large heated stock tank.
Clap clap clap, hurray for me!
There are still 3 places to carry water to and if I do it with small buckets and make more than one trip, I can get it done by myself.

We got the house all spiffed up for the 'kids' to arrive. Arranged for mom in law to come over. We planned how we'd pull up right next to the one little step and lay out a non slip rug...we even discussed having 'spotters' for her.
I bought a cover for the couch instead of the old ugly looking thing I've used forever. It actually looks nice and Morris loves it.

Rich was having such a hard time with being outside I got up early and took care of all of the chores. I gave the hounds new bedding and heaped up the wonderful smelling pine shavings. They were grateful as could be.
I pried the fodder bales with a pitch fork and the cattle seemed to smile at me.

Then the phone call. The 'kids' couldn't come. When Rich hung up the phone it seemed as though his face had *transmorgified* yeah...not a word, but there you are. The light died out of his eyes and he announced that he was going to bed.

Later that day we talked.
Him: Why can't I do anything?

Me: What can't you do?

Him: I can't do chores, I can't breath, and... maybe...
I waited.

Him: Maybe I'm depressed. Why am I like this?

Me: [I clutched my hands together below the kitchen table] Well, throat cancer took its toll, the stroke has not been an easy thing to over come. You look good, you look fine, but...with what you have been through in the past two years? It has beaten the crap out of you.

Him: You are saying I'm [he stops, looking for a word as he often does...] having get to older.

Me: Well, I am getting older also. [I understand so much of what he wants to say, however it is often the same conversation each day now.]

Him: You aren't like that. You are going to getter.

Me ~ I stand up and hug him. His speech gets very garbled which indicates his frustrations and sadness. This is how he is now.
When he gets upset or down, he loses words and thoughts.

Me: I do love you.
Him: I'm going to nap.

Well I sit down and compose an email to our local ADRC [Aging Disabilities Resource Center]. I ask for help, I ask for some tools to deal with my husband.

I want to hug him, I want to yell at him. I want to hold him and I want to throw things.
I need to stay healthy and sane to help him.

I write a note to self. Call his doctor at the VA. Is it a bigger COPD issue? Mental health issue? Physical issue? How can I make his days more meaningful? How can I help him day to day and not lose my temper.

Perhaps Tricia can help. We will be meeting on the 3rd at 1PM.
I know I won't find the answers to everything, however I will be able to go in some sort of direction.

They will get along

Today we met with a Social Worker, a Resident Doctor Pete, and, Dr. LaConte.
I had a bit of a laugh when the Social Worker handed me her business card.  Sarah Rogers.
Let's just say it is a family name and Rogers was my maiden name.

Dr. Faris, true to his word was there.  He took a stool and sat quietly in the corner as Sarah and the Doctor Peter talked with Rich.

It was somewhat like an interview to see what issues regarding his health he would like addressed.

Sarah was direct and asked fantastic questions of Rich about regarding faith, spirituality, and medical concerns.
She was able to get Rich to give her a lot of information.

I'm not going to repeat our 2 hours with the doctors, but I will say I used a digital recorder so I can review the meeting. 

Struggling with lingering side effects of the radiation and chemo were his main complaints.  'Finding the new normal' was a key phrase.  Rich wanted to find the old normal.  His wish is to get back to what he used to be.

I'm not sure that is ever going to occur.  But that is my unspoken opinion and I will support Rich's desire to get back to the old normal.

Another main complaint is his balance.  We spoke at length about that today.
I think I haven't realized how much the loss his ease of footing has effected his mental well being.


I know Dr. Faris expressed how interesting it was to sit back and observe and not have to be involved in the conversation.


After nearly two hours of talking we are going to work on the balance issue first as that seems to be a key to making Rich feel more comfortable.

Dr. LaConte thought that Physical Therapy may help. 

Ear/Nose/Throat will be looking to see if there was any inner ear damage from radiation therapy 'scattering', as well as a follow up to check where the tumor had been on his tonsil.

There was so much covered by everyone it will take me listening to the meeting at least one more time to make some more sense out of it.

On our way home Rich talked about how much he like Dr. LaConte and how he felt really comfortable with him.

"I think we will get along just fine."  Rich said.

One day at a time.

Finally after weeks and weeks of seemingly never ending appointments we have gotten a week of 'peace'.

I took some time to be unavailable to work.  No, I do not get vacation nor do I get paid.

This week I got the Subaru in for a oil change, tire rotation, and over all check up.  The vehicle continues to perform well for us.

I was able to take Morris to the vet to get his overdue rabies shot.  I was able to get us both in for haircuts.

Until this week our schedule is such, that I have been working or we have been driving for follow up appointments in Madison.  We simply have been overwhelmed since he was first diagnosed.

So we concentrated on some farm work and catching up on other things.

We did some tree chopping. Brush piling.

Clearing out the dead ash trees...
These were things that had needed to be done.

We will be 4 months out of treatment come October 15th.
How does it feel?

His salivary glands may never be the same.
His energy level may never be the same.  This was explained by more than one doctor.  
Yet Rich feels as if he should feel 100% again.

He has lost a lot of weight after treatment.  I bought him new 'skinnier' jeans today.  Down two inches.

But we have really good days and then days not so good.

Yesterday was partly good and partly not so great.

Is this our new norm?

We follow the motto given to us by the girls at the infusion clinic and at the radiation clinic.

One
Day
At
A
Time.

New Scan coming up

The CT scan of the brain will be on Thursday this week.

Rich's comments about the latest developments are basically this:
"What next?"

At this point I am trying to get the VA and the UW to be able to 'communicate' with each other better.
I'm not sure that is possible.

So until later this week, keep your fingers crossed.

Follow ups and after care

Things I learned today.

Swallow/Speech Therapy.
Head and Neck Cancer patients must always do swallowing exercises and eat small meals often.  To miss the exercises or not eat a patient will run the risk of losing their ability to swallow.
This is forever.  Not just during the treatment and a while after the treatment.

Radiation damages the muscles of the head and neck.  In order to keep them working, the patient needs to work at it.  For the rest of their lives.

In the back of my mind I knew this because I'd done research at PubMed and also had been in contact with other HNC patients through a website called CancerCompass.

Rich had been doing very well until he hit a road block with his blood pressure and some stomach issues.  We had gone to the VA clinic in Baraboo and the doctor a few weeks ago had felt that the stomach/bowel issues were from a change in medication and diet.  The first line of treatment is to take away the offending medications which could cause the problem.
However, Rich was still having some pretty intense pain in his lower left quadrant [bowels] and intermittent diarrhea.  

We spoke with Dr. Rahim and Rich explained what had been going on.  
Dr. Rahim thought for a moment and then explained that Rich might have had a shock to his intestinal system when Miss Peggy was removed.  
This could have caused paralytic ileus, or a slow down of the squeezing motion [known as paristalsis] of the intestines to move digested food.  
This in turn could have caused a partial blockage of the intestines.
To confirm this, we went to X-ray and indeed a partial blockage was found.

So I/we learned that the digestive system can have a shock and get fouled up. 

Cancer and Depression.
Well these two things can go together.  One of the issues is that when you finish treatment, you figure it is over and you are going to feel much better right?
Not necessarily.

Rich had a few weeks where he did feel much better.  It was amazing, he felt alive and energetic.

Then things went a bit south.  The energy level dropped drastically.
Let me add here that at this time our weather turned very hot and very humid.  Very hot conditions are hard on anyone, let alone a cancer patient.

Recovery from HNC treatment can take a long time.  Life in many ways does not return to pre-cancer normal.

In fact you should have a mindset that life after treatment may just be your 'new' normal.  

So combine feeling terrible, with low energy, pain that you don't understand, and the inability to get things done that you want to do and...
depression sets in.

The journey through treatment is only the beginning as the road to healing is not an easy one either.

As one of the nurses told us today.

"One Day at a Time."

Low Blood Pressure, Lymphedema of the neck

Some of the issues that are still creeping around with Rich are the Lymphedema of the neck, which he was told was 'normal'.
However it is bothering him and I have done some research on this condition.  I find it surprising that the cancer care providers haven't addressed this issue.

Of course dealing with the VA and looking for some Physical Therapy for this condition could be interesting to say the least.
I've been researching nih.gov and pubmed for information on what is called Head and Neck Lymphedema which is shortened to: HNL.

Less than 50% of HNC [Head Neck Cancer] patients get HNL and sometimes it can be pretty serious.  So I am adding this to the list of things we must see the doctors about.

From The Role of Lyphedema in Head and Neck Cancer

Clinically, the presentation of lymphedema parallels its level of severity. In the earliest stage, HNL may present as “heaviness” or “tightness” without visible edema. As HNL progresses, it is apparent as a barely noticeable fullness without functional detriment, and can progress to pitting edema that may or may not affect function. Although rare in HNC patients, lymphedema can present as grossly disfiguring elephantiasis with severe disability in its final stage.

Similar to other side effects that are associated with the treatment for head and neck tumors, quality of life is often significantly impacted by HNL. The effects of HNL are not simply cosmetic. Significant lymphedema of the face, mouth, and neck can result in substantial functional consequences to communication (speaking, reading, writing, and hearing), alimentation, and respiration

Yesterday Rich's blood pressure dropped from 133/68 to 119/67 within two minutes.  So obviously last week's visit to the clinic eliminated his BP meds but it hasn't resolved that particular issue.

Yesterday I did find a site that showed how to do home physical therapy to drain the damaged lymph nodes.  
The hardest part is to actually insist that Rich sit and do the 5 minutes of massage.  I even bookmarked it on his chromebook so that he can watch and follow along when I am not home.

He did it when I insisted on it yesterday morning, but then brushed it off last night.

Of course he is feeling some extreme fatigue right now and that could have a lot to do with both the low blood pressure and the lymph nodes not properly draining.

I think the biggest problem he is having is that he thought when he was done with chemo and radiation...and things would go back to normal.

Recovery from HNC can take a long time.  With some of his other health issues, it may be a bit of a struggle and I don't think he is mentally handling it very well at this point.

Tuesday we see Dr. Rahim, his oncologist and perhaps we can address these issues.  

So we wait until then.

No More Chemo?

Promptly on Monday the flurry of appointments began.

The hospital had done a CT scan of their own along with an echo-cardiogram, X- rays, and many blood draws.

People came and went from his room.  We commented on the fact that we felt the door should just be revolving.
The Neurologist was leaning towards a TIA or what they call a 'mini-stroke'.

No progress was made other than testing and more testing on Monday.  

Tuesday rolled around and when Stephanie and I got to the VA we found that Rich had been whisked off to his appointment with a Dr. Faris who specialized in Psychology.

Steph stayed at the room while I ran down to Mental Health to see if I could catch up to Rich.  
I found him sitting in a wheelchair with his green pj's on.  He looked sad and a bit displaced.

When Dr. Faris came for him, I wheeled him into his office.  Rich asked me to stay and Dr. Faris asked Rich if it was okay that I be included in the meeting. Rich nodded and said something to the affect, that I was always included in all of his mental health interactions.

Dr. Faris works with Veterans who often have major health issues along with PTSD.  Apparently he works quite a bit out of the 'cancer' clinic.

I sort of secretly wondered why we hadn't been seen by him from the get go of the cancer diagnosis.

We talked about health care, we talked about what Rich wanted and needed and we even talked about how the cancer treatments had taken over his life to the point where he felt he had absolutely no control over his life anymore.  How he felt that he was just priming for the next chemo treatment and wondering how it would affect him.
Truly this regime of 33 radiations and 6 chemotherapy infusions done at the same time was brutal to anyone.  Emotionally it is tolling to those who don't have mental health issues.

I raised a question which had been on my mind.

"I wonder if you have had enough Chemotherapy to be effective for your treatment?  I wonder if not having any more chemo would change the quality of your life?  Is this a question you would like to ask your Chemo Doctor?"  I asked Rich, while holding his hand.

Dr. Faris thought this a valid question and could not offer an opinion on it but said it wouldn't hurt to ask.  Sometimes the quality of a person's life outweighs the treatment that is being given.

Stephanie and I had talked about this in great length on our trips back and forth to Madison since Sunday.  
When was enough enough?

The past 3 weeks had seen an Anaphylatic reaction that ended in hospitalization with a severity of 4 out of 4.
A mental health breakdown which resulted in a 4 day stay -- and thus this meeting with Dr. Faris.
A TIA that he was currently being tested and run through the mill for, with another 4 day stay at the hospital.

Dr. Faris let Rich and I discuss the issues and weigh them.  Rich brightened at the thought of no more chemo.

Our next appointment was with Dr. R. the chemo/oncology doctor.  I'd grown to respect and really like this doctor.  He was extremely compassionate and always prepared to answer questions.  He was supportive of using a voice recorder so we could review our discussions.

Dr. R came out to the waiting room and ushered Stephanie, myself, and Rich into an exam room.
That was a bit unusual in itself.

Dr. R, looked at Rich then at us.  He said he'd just reviewed the latest notes.  He looked at all of us and then address Rich.
Rich was exhausted and tired of being rushed from one appointment to the next.

As a family, Steph, Rich, and I asked some questions about the continuation or end of chemotherapy.
We talked at length and Dr. R said he had no issue with stopping chemo at this point, Rich had done over half of the therapies and with all of the reactions he'd had and other health issues, he felt that this would not be a terrible course to follow.
The tumor in the lymph node was gone and he felt that the one in the throat was nearly gone.  The chemo along with radiation had been working very well, but there was the patient's comfort and quality of life to consider...ending chemo?  It may or may not change the final outcome, but...

Of course that had to be the patient's decision.

I held on to Rich's hand and Steph was close to him on the other side.  Rich felt that an end to chemo would be in his best interests mentally and physically.

We would continue with the radiation treatments and then Dr. W the Head and Neck Oncologist from the UW along with Dr. R would then put Rich on monitor 'mode'.
After he had healed some from the last radiation, they would follow up with a scan and then continue to monitor Rich.

I can say this.
This decision immediately showed up in Rich as a catalyst.  His mental outlook, his physical being began to show immediate improvement.

No more chemo?  That was good with us.
In fact it was the uplift that Rich needed so badly.

And it showed as he hammed it up for me just before being released from the hospital.

When we got home that night, Rich used his cane and we went for a walk to see Speedy, the new bull calf.

This was a first.  He had energy and a positive outlook for the first time in many weeks.

No more chemo was a good decision, no matter the end result.

Update ~ Mental Health

Well the powers that be finally did transfer him to the Mental Health floor.

It is a lock down floor.  It didn't used to be this way, but changes over the past few years have made it so.

My husband's room has no shades, blind, curtains.  No door to the bathroom.
His bed is bolted down.  There is a chair, it is steel and bolted to the floor.
There is no patient phone.
All calls are screened through the nurse's station.


His room is locked.  He can open it up and ask to see a nurse.  Nurses access him by key.

He is not bothered by this as he feels that his cell is a safe place for him to be.

His team of doctors that saw him this morning told him that he needed to socialize.  He said no.  The last thing he wanted to discuss was war stories with other vets.  He just wanted to be left alone.

I know, you are probably thinking that this is anti social behavior, and yes it is.  But he feels safe right now.  
He has made his radiology treatments and says he must be prepared to do chemo tomorrow as he wants to do it whether he is in the 'right place in his head or not'.

He told me that this cancer is not going to beat him.  At least this is a good attitude today.  We have talked often on the phone.

He cannot use his CPAP at night unless his door is open and there is a nurse sitting in the doorway.

He feels bad about that and has decided not to use his CPAP.

His chemo is at 8am tomorrow morning and I will be there to support him.

We are wondering if he'll be discharged on Friday.  We will know Friday.

His daughter and son in law are bringing a futon to put in the living room so he won't have to negotiate stairs for the next few weeks.  They are also coming armed with weed whackers and other tools to help get the yard whipped into shape.

Today I bought a used self propelled mower and started hacking away at the yard.  Last night our wonderful neighbor walked down and started on hacking the grass around the house.

Looking at a nicely mowed portion of yard relaxed me in a way I haven't felt in weeks.  Odd isn't it?

The fellow that we deal with regarding lawn mowers will come out Saturday and give me a lesson on the Country Clipper, which is Rich's pride and joy mowing monster machine.

Back to Rich.  I'll be there for chemo and radiation and then I think I can stay and visit him on the floor or under nurse supervision in a common area.

He is looking forward to the visit.  But is having a hard time with feeling love for me.  He shuts down his feelings while under stress.

The thing is, he still understands what he is doing and knows that he needs help.  We call it Building Emotional Walls.  I'm okay with that as I've been through this before.

~~~~ Update...
Rich will be coming home for the weekend!

Coping with Emotional ups and downs

One of the unexpected issues I'm dealing with this weekend is the after affects of the nearly deadly reaction to Cetuximab.

Rich is beginning to have some emotional issues with his daily outlook on life.

Some of these are normal for patients who have cancer and are undergoing treatment.
In my mind combining chemotherapy with radiation at the same time is a pretty tough regime for the body to handle.
Some things that he is experiencing:

• Worry
• No interest in things that were normally of interest
• Emotional numbness
• Disconnect 
• Feelings of no self worth
• Anxiety
• Depression
• Hopelessness
• Extreme Fatigue

I think that the emotional side of being treated for cancer is taking its toll on him.
He feels helpless, as if he can't do anything that he normally does.
He is extremely tired and fatigued all of the time and has developed severe trembling which seems to confuse the doctors.

I have an explanation for that which is pretty simple.  Combine his medications, add anxiety, distress, emotional fatigue, and physical fatigue, and you will get shakiness.

Chemotherapy adds to this by giving these very same symptoms aside from the toxic side effects.  Chemo of any kind can give a patient these feelings.
The 'cancer' diagnosis itself is a reason to send anyone into an emotional tailspin.

Since the Cetuximab treatment the emotional fall out is much worse than it was the previous week.  This makes complete sense to me.  But not to 'my patient'.

My once very strong independent husband, who was THE decision maker around our farm and house has suddenly had it yanked away from him.

This week has been an emotional roller-coaster that would give anyone a pause that is a caregiver.
Last night I held my husband for over an hour while he wept.  This was the most I could do for him.

I felt helpless.

Where Flowers Bloom, 

So does Hope.

So today is one more day.

And I continue to live by the advice found on multiple cancer sites.
One
day
at
a
time.