14 Month post Cancer follow up

Today is the 14 month post cancer follow up. 
Cancer.
That word still lingers in the back of our minds lurking as we continue to go through appointments with ENT, CAT scans, and mild scares from 'something showed up' we need another scan.

To...it was nothing.

However the good news is that Rich is doing better and he has this behind him. 
He also told the doctors that he wouldn't ever go through treatment again. I know he is solid in those thoughts. Chemo nearly killed him and he reacted so poorly to it. 

I'm hoping that our follow up visit will be another one where Dr. Witek slaps him on the back and tells him he is doing well.
We may have passed that magical one year date and now look forward to a 5 year prognosis.

Statistics show that if the cancer is to return, it will in the first year...or within 5 years.

So we still live with a cloud over our heads. However that cloud feels pretty distant at this time.

Conversations

From October 13th's 'Journal'

Conversations with Rich can sometimes be pretty difficult.  He is not always open to saying what he is really thinking.
He can be a very difficult person to read.


Dr. Faris asked how he was doing.  Of course Rich answered "ain't worth a shit."  This is his usual tag line and has been since pre cancer diagnosis.

Dr. Faris replied, "Help me understand, that fellow which is you...I hear up the hallway..." he gestures to the hall outside his office on the Mental Health floor of the VA, "always sounds robust and happy.  I can hear your laughter when you stop and talk to Chris in his office."

I sit back and wait quietly for Rich to answer this.  I've noticed the same.  While he is 'visiting' with VA employees, or for example other folks, he gets caught up in the conversation and so many people have commented 'what a great fun person he must be!'  

Rich is quiet for a split second.  "I'm pretending," he replies. "I'm not happy, I'm just acting."

My brow furrows and I try to watch Rich and Dr. Faris at the same time.  Pretending? 
I can't stop myself.
I blurt out.

"I believe then that you need to receive the Academy Award for Best Actor in Any Situation. You didn't have a good time at Jersey Valley?" 

I am referring to meeting with another couple the weekend before and how my husband and my new friend's husband had so much in common as did the 'girls'.  
Of course the ice breaker had been her beautiful red Mustang that both of our husbands- who had gone through incredibly nasty treatments for cancer- admired.

Rich shrugs.  I am floored.  On our way home we'd talked about how much we enjoyed our visit with Sue and Nick and their dog.  I look over at Dr. Faris who is watching carefully.

"So...," Dr. Faris says. "Richard, you never enjoy engaging with other people? Is that what you are saying? You are then the best actor in the world?"

A big sigh comes from Rich. "Yes.  I'm just acting out trying to be normal."

"What gives you satisfaction or peace?  Something like fishing?" Dr. Faris watches.

"No. Not even then, but I love fishing." Rich looks straight at Dr. Faris.  "My only peace will be found when I am dead."

I want to stand up and walk out.  I am shocked by his statement and I want to ask.  "Wow, don't I mean anything to you, doesn't your family mean a thing to you?"  I'm pretty sure that isn't exactly what he meant. He goes on and on about the grand kids, his daughter, my older son and my youngest son's children.  I know he is not pretending when family is around.  I know this deep within my heart and soul.

I wonder if my bewilderment and anger show.  I then remind myself that I am dealing with a man who has just gone through a very tough cancer treatment and suffers from PTSD.

I am left wondering if he truly believes that statement or if that is just what he feels today.


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

Today we visit with the Palliative Care doctor, it should be very interesting.

Hair is growing back!

The last day of radiation was June 15th and Rich's hair kept falling out.  He had no beard and if you know Rich, you know he takes great pride in his luxurious mustache and beard.

Dr. Witek had told Rich not to cut his hair during treatment and that he would lose hair across the back of his head.

He did, but yesterday we saw itty bitty hairs coming back in.
His facial hair is starting to come back in.

This shot probably looks as though he is sad but he was just watching out the window while having morning coffee.

We were watching the mules drink water from the Big Tank.

We still seem to be battling some stomach/intestine issues but at least he isn't pain like he was before.

Yesterday was a 'good' day.  He felt like doing a bit more than he has in a while.  

Divorcing Miss Peggy

7 Weeks out of treatment!

Things are starting to turn around the corner and come back towards a new normal.

Rich feels like doing more things, like mowing the pasture weeds down, doing light yard work but the recent heat wave along with a lot of humidity has dampened his spirit.
He feels like he has the whole summer to catch up on.

Indeed in many ways he has weeks of 'life' that he sort of missed while being in treatment.  Chemo was no cakewalk as was the radiation.

July 27th was the day scheduled for the removal of the PEG tube.  In the beginning, we'd decided to call this tube 'Miss Peggy'.  Rich had said that if he had to sleep with the damn thing it was getting a name.

And he gave it a woman's name, he said, because 'she' was such a pain to look after and was always getting in the way.

I had to go to work and Rich had said he felt strong enough to drive to Madison and back on his own.

The PEG tube was in place in case Rich lost the ability to swallow, which often comes with Throat Cancer treatment.  The throat gets so intensely sore and painful it becomes impossible for some patients to swallow even pureed food. But he was a determined soul and we never had to use the feeding tube.

The withdrawal of the tube was painless he told me.  He met with his psychiatrist afterwards.  Dr. Cordes is an interesting person.  He is blind and in some ways I think that makes him more perceptive to Rich, he doesn't see the body movements that Rich uses while he communicates but Dr. Cordes can hear the inflections in his voice.

Dr. Cordes greeted Rich and Rich happily announced to Cordes that he'd finally gotten his divorce.  Dr. Cordes was temporarily thrown off as his mind wandered probably to all the meetings that Rich and I had gone to together.

"A divorce?" he asked.
"Yes Doc, from Miss Peggy, my feeding tube."

Rich explained that he and Cordes discussed his recovery and told the Doc that he still felt he wasn't doing 'good enough' even though everyone was telling him that he was.  Dr. Cordes suggested that Rich do what everyone else around him was doing...giving him a pat on the back.  Rich should stop and give himself a pat on the back.

In my observation, I told Rich that he was actually more active now than he had been in a year.  He worked outdoors for longer periods of time and got more 'stuff' done.

I wonder if the cancer that had been growing there for who knows how long had been a part of his continous exhaustion last year.  We'd addressed it as a possible depression issue, but what if it had been 'THE' Cancer?

I guess we'll never know at this point.  And really we both don't care.  Rich's attitude is so fantastic, even though he still has daily pain in swallowing, that we have no doubt in our heads that he is cured and better.

Of course the PET scan in September will address that issue for us.

Miss Peggy has exited our life.  No more flushing 'her' and for Rich, she no longer gets in his way.

It is a good thing.

One week later

Radiation treatment has been over for one week and Rich expected to bounce back to normal within days.

He was told that he had more recovery time and that the radiation was to drag him down with fatigue for at least 4 to 6 more weeks and some people...well, it took longer.

Rich is not patient in this area.
He decided to mow the yard.  This involved cleaning the mower deck, cleaning up the blades, and other things in preparation.

By noon he was exhausted.  I suggested a nap.  

He did get up and get the yard mowed around the house before he parked the mower.  I could tell by the way he walked that he was done in.
He'd been cautioned not to overdo it.  But he is also the type of person who will push it to the limit and then pay for it later.

This week has seen up and down days with energy and throat pain.
However he is eating better and doesn't seem to be having the issues he was having last week with water going down the wrong way.

He coughs up nasty mucositis which is a side effect of radiation. He says that his throat hurts worse in some ways than it did when he was in treatment.

Patience little one...I want to say.  Patience.

I must admit, if I were in his place, I'd be pushing too.

His neck is starting to heal up where the skin had broken down and was opening up.  I think he'll probably scar in one area, but we've decided to call it a "Badge" for what he has been through.

A very kind friend of ours delivered hay today and so we are freshly supplied in that area.
Rich hasn't felt well enough to help with the chores.
I think balance is still an issue when he is tired.

Tomorrow we have an appointment with Speech.  I'm not sure but this may be the appointment where they check his swallowing abilities and how damaged his epiglottis is.

Then we meet with Dr. Rahim the chemo oncologist.  

We enter the after treatment phase now.  The follow up appointments and tests.

No PET scan for at least three months to see if they 'got it all'.  I probably worry about that aspect a bit more than I should.

So to sum it up.  7 days after the end of radiation, things are slightly better in some areas and improvement is slow.

Hot neck

The radiation sure is causing Rich's neck to be sore not only on the inside, but also on the outside.

I am amazed at how reddish dark the neck is where he is getting the RAD treatments.

We asked Dr. Witek on Friday if we could use cool compresses to ease some of the heat and pain on the outside of the neck.

He grinned and said I could stick Rich's head in the freezer...he paused and looked at Rich..."and shut the door!"  We all laughed.

But the cool compress does work.  We have to remember though to continuously keep the radiated skin moisturized.  Rich likes Lubriderm the best.

At this point the skin is an angry purple - red color, the sort of color you would expect to see on a severe sun burn.

Outside Rich wears a wide brimmed hat and a cloth to shade the back of his neck.  The skin is very sensitive to the sun and will be for quite a while.

Tonight I made an odd mix of foods for supper.  I pan sauteed a sirloin tip steak and then cut it into extremely thin strips.  I sauteed mushrooms and added that to the strips.
Rich wanted some beans, so I added them to the mix and let the ingredients just come to a light simmer.

The sirloin steak was so incredibly tender and tasty.  The mushrooms mixed with the steak and beans actually tasted wonderful.  Rich was able to take the thin strips and cut them smaller so it was easy to swallow.  

Well, there you go.  Dr. Witek told him weeks ago to forget steaks for a while.
I guess we showed him!

Tips:
Stay out of the sun with radiated skin...it will hurt.
Cool compresses help... A LOT
Peppermint tea and honey...cool it off and drink, helps with the sore throat
Lots of lotion...as often as you can do it.
Unscented very very mild soap...don NOT scrub it.
For guys: do not shave the area!
No ICE packs, cool to moderately cold compresses.

Hint:  Take a cloth and rinse in cool water.  After it is done, put the cloth in a zip lock baggy and stick it in the fridge to keep it cool.


While at home, take a t-shirt and cut around the neck so the material is not rubbing on the burned skin.

After we are done today... Next Monday is the last day of Radiation!
Who is counting?
We are!

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.

Anaphylaxis Reaction to Chemo

From my journal May 20th.

Nurse Jackie recieved the new Chemo 'cocktail' to give to Rich and began to prepare to give it to him.

She explained that he would need to tell her right away if he felt funny in any way shape or form.

He agreed.  Rich was in a great mood, he'd eaten a good breakfast and a good lunch.  

In our meeting with Dr. R the day before the Oncologist Team had suggested a change in Chemo drugs because of the hearing loss experienced with Cisplatin.

The new 'cocktail' was called Erbitux.  All chemo has side effects and we read about them and discussed them at length with Dr. R and signed the paperwork to go ahead with the treatment.

Jackie laughed and Rich made jokes about having to be stuck in the chair for hours on end.  
I was busy creating a fractal called 'Cure Cancer' with my Mandelbulb 3D program on my laptop.

The Infusion clinic was busy with nurses attending other patients.  I started working on the color scheme when Jackie asked Rich again if he felt funny.

I looked over.  Rich nodded, his eyes had narrowed and looked far off. Jackie asked if he could hear her.  He nodded.  
Was he experiencing tunnel vision?
He nodded.
Could he answer her?
His head dropped to his chest.

Mr. Ewing, Richard, Richard!  Jackie's voice became concerned.

Jackie must have sent out some sort of alert or maybe even shouted for help, because in the next instant he was surrounded by nurses.  Blood pressure numbers were being read off, O2 levels.

I slammed my lid on the laptop and grabbed my stuff.  I backed out of the way and into a corner.  
Over the PA system came a call for the 'Crash Team' or whatever it was called.  The announcement was for our little room.  
I turned and watched as more people rushed in, a doctor ran in from a clinic across the hall.

Several people with giant orange bags entered and I shrunk back to stay out of the way.
I saw Rich's chest heaving, I could see he was grey and sweating.  His legs began to jerk and twitch. 
They were trying to get a response and none was coming.

I looked up.  The VA police had arrived and I was curious at first, then saw that they were making sure that the doorways were open so that the medical teams could come and go without using them.  And they were keeping anyone curious at bay.

Nurse Ronnie came up to me and asked me if I was okay.  I simply replied, "Yes."  She squeezed my arm.
She started to say something and I stared over at the mass of medical people and quietly said, "Anaphylactic shock?"

She hugged me, I hugged her back but watched.

On TV, everything happens so that you the viewer can understand what is going on.  Conversations are clear and concise.  Not so here.  I caught parts of sentences being uttered and someone repeating them.  Another voice. And another all jumbled together.

For a moment the staff backed off and I stepped forward to touch Rich. 

I glanced down at his arm where the chemo concoction had gone in.  It was bright red with huge welts on it.  
Hives.
I'd never seen hives like that before.

I backed away.
The Team stabilized him and then we moved to the ED where they put him on a bed.

Dr. R appeared and I walked with him back to the Infusion clinic to pick up the rest of my things.  Both he and Jackie looked a bit distraught.  I touched Dr. R's arm and told him it would be okay.
According to the literature there is a less than .001% chance of a severe reaction like this to the drug.

He couldn't have known.  Funny thought, me trying to comfort a doctor?

Ronnie and Jackie asked me again if I was okay.

Was I okay?  I didn't know.  I had gone into my mode of emotional distancing or was it withdrawal?  I would have done no good by breaking down and causing a scene.

End result.  Rich is home today [Thursday], he feels fine.  He doesn't recall most of the incident and he did very well today.  He even ate like a champ.  We made our radiation appointment and headed home.

As soon as we dropped our stuff off in the house, we both headed upstairs to take nice long restful naps.

Half way through Chemo!

13 Radiation Treatments in, 20 left to go.
3 Chemo Infusions done, 3 left.

We are entering the 4th week of treatments.  Rich was told by Dr. W of the UW that he would have a very difficult time swallowing by this time.

Indeed Rich does have a horrid time taking his medications.  His mouth feels awfully dry all of the time and foods have begun to lose their normal taste.

This mostly from the throat radiation.
Yet Rich insists on continuing to eat small portions of food. Mini meals.  He can't drink anything carbonated at this time as it burns his gums and throat to the point of tears.

Milkshakes and smoothies however go down nicely.  The cool drink and the 'smoothness' of it slides right on down.  We have fortified the drinks with protein powder and I am looking for some protein drinks to have along for anytime 'snacks'.

He ate a vegetable soup with hamburger in it the other night ... two small bowls and was delighted to eat it. Other meals include scrambled eggs with small chopped up bacon sprinkled with cheese.
He can still eat lightly toasted English muffins with a huge slather of homemade jelly on it.  
My efforts at homemade jelly are really being appreciated at the moment.

How is his energy level?  Awful.  Dr. W. told him to rest and sleep ALL weekend because he'd be back at it come Monday.

He is exhausted, which we were told is normal for someone to have both radiation and chemotherapy at the same time.  The effects of radiation will last up to ... or beyond 4 weeks after treatment stops.

Rich wasn't pleased with that information, but since his tumor on his lymph node can't be felt any more...and the one on his tonsil is 'pea' sized.  
This godawful treatment is working. 

His daughter and I keep concocting meals that are high in protein and carbs along with drinks that replenish what chemo takes out of him.

We are learning as we go and it isn't easy.  
But we sure have the determination.
Which could only be possible with support from friends and family.

Meet with Docs and mega power meals

Good news.

His daughter took Rich this time for his Chemo treatment and she took the voice recorder.

So yesterday he found out that he only has three Chemo treatments left.
Halfway home with that!

And this Friday will be 13 Radiation Treatments under his belt. That means 20 left.

It is amazing that he is still swallowing and eating according to the doctors.  Yes there is pain involved but he manages to eat.

Yesterday the doctors were amazed.  He had actually gained a small amount of weight from their weigh in last week.

I listened to him brag on the 'cooking' of concoctions that I'd been making all along.  
One dish I made was a layer of ground beef in a lasagna pan...extra ground up.  A layer of cheddar cheese, a layer of mashed potatoes, more cheese and then topped with bacon.

Doesn't that just scream calories and carbs?  Well even with a sore throat Rich as able to eat that.
We've also done a lot of scrambled eggs.
For snacks, I've made power drinks out of Ensure protein powder, yogurt, whole milk, malt flavor, fruits .. or chocolate, and ice cream.

Apparently these drinks go down like silk and he has up to 3 or 4 a day.

Today I will be making a soup that I can then blend slightly to make it easier to eat.

I'll freeze it in small packages.  The cheesy scalloped homemade potato dish disappeared last night so that is another meal I can make.

Another postive note.  Dr. W from UW said the tumors are receding.  Yesterday Dr. R could 'see' the difference by looking in his throat.

These are all positive things.  Yet Rich still is fatigued, weak, wobbly, and woozy.

After all, he had his Toxic Cocktail yesterday.

I am actually getting a break from being Care Giver.  I think it was really needed.

Emotionally I am feeling better.  I think a long nap will be in store for me tomorrow as it is supposed to rain most of the day.

Today the sun is shining and I think I have some things I'd like to do just for me.