Thursday, April 30, 2015

First Day of Chemo and Rad

What a wonderful daughter Rich has.  Stephanie came Monday night to our house and then stayed over night and helped me with chores in the morning.

She then took her dad to the MAD VA and went with him through all of his appointments.

Chemo took hours to do and she took notes for me, asked questions and even updated our Gmail Calendar with new appointments.  What a fantastic way to share information!

After his long day, she took him home to her house.  They met me at the UW Carbone Cancer Center today where I picked him up and brought him home.

Our schedule for Rad will be slightly different each week, so no set will change each week. 
Next week the times vary at least 3 times.

Rich had a medication in his Chemotherapy that is for nausea.  One of the side effects is that it could make the patient euphoric or a bit moody.
Oh wow, talk about having someone who is ... like on speed!  He talked volumes louder and was almost obnoxious about telling me how to drive.  He rambled on about things ... he was talking faster than I was driving.

Yep, our first chemo experience was enlightening.  Next week I'll talk to the nurses in the infusion clinic and ask them if this is abnormal.

He had his second radiation today and had forgotten to take his anxiety meds. He said it was the longest 15 minutes of his life.
We stopped to eat lunch at Grandma's Cafe in Arena, WI.  By the way, if you ever travel Highway 14 from Madison...stop there.  It is good food and served right!

We'll be up at 5:30 A.M. tomorrow to get the ball rolling.  Monday through Friday we have appointments at unexpected times to be determined by the VA and the UW Carbone Cancer Center each week.

One of the best things I did is to have Rich sign a sheet giving the VA permission to share medical information with Steph about her dad and let her have input on appointments.

Yesterday Steph took her dad to his first appointments for Chemo and Radiation. I had the day to myself.  I had a delivery, a doctor's appointment, and I treated myself to a hair cut.  
Then I sat outside in a lawn chair after chores and listened to the birds sing while Morris wandered around.  

Life is good ... considering.

Wednesday, April 29, 2015

Helicopters and Chemo

Yesterday we drove to Madison for some appointments.

We got there and made it to the first one.
When we checked in for the second one with the Chemo doctors, Rich was asked if he had his labs.

It wasn't on our sheet nor was it scheduled.  Well things went a bit wacky after that.

When we got in the room with Dr. R. we were told that they may be starting chemo today...

But from now on, after this first treatment Chemotherapy would be on Tuesdays,...
they were still awaiting to hear from the Radiation folks.

Two different hospitals are involved in this treatment.  Communication between the two seems to be a bit...well...
difficult...even though they are connected to each other by walk ways, they are two different entities.
Even though UW doctors rotate through the VA Hospital and clinics, they still are two separate entities.

There is quite a bit of 'red' tape to cut through when dealing with the VA and non VA hospitals.

Eventually our Care Coordinator Gabe got down to brass tacks.  He took us to the Chemo Clinic or Infusion Clinic to meet the nurses.
While Nurse Ronnie explained what to expect Gabe worked on getting a time for Radiation Therapy from the University Hospital.

During the time that we were sitting there, a Flight for Life helicopter hovered nearby to land at the UW.  
When Rich is emotional this is a trigger for his PTSD.  

Suddenly he went quiet, whispered "Chopper," and stared down at his hands which shook.
Ronnie and I looked at each other.  I saw on her face that she understood what was happening.

In a few moments it was over and we got back to our discussion.  The infusion clinic is nice and spacious.  There is a snack bar, and each infusion room has comfortable chairs for family to be with the patient.  And there is Wifi!

Finally we were ushered out of the clinic with appointment times.  11am, Dental, 12pm Chemo, 3pm Radiation.

Then his daughter will be taking him home to her house where he will stay tonight and then tomorrow I meet him at the Radiation Clinic.

We are beginning to start a routine.  Each week before chemo we have to do labs.  5 days a week will be radiation.
I am reaching out to a couple of neighbors to cook some meals for us.  I'm finding that long days are not good for making decent meals.

I've looked at the 5 day week with fresh eyes.  We'll see if working Saturday and Sunday are going to work.  I feel it won't work out really well if I am not able to keep up on house chores, groceries, and those small mundane things we all take for granted.

Something has to give.

Now just to figure out the schedule for feeding animals...

Tuesday, April 28, 2015

Here we go again...consult with Chemo

Apparently our start date was not yesterday.  We awaited a phone call from our Coordinator at the VA in the Chemo clinic that had told us last week that our 'start' date for therapy was going to be Monday.

The frustration of waiting two days for conformation was exhausting. Not only that, it made planning anything very difficult.

However, Monday has passed and we have appointments today to check the PEG tube aka Miss Peggy.

So we look forward to today.  Today we may get more concrete information as to what THE Plan is.

We can hope that today is the day that they lay out the plan for us. Otherwise we could be pretty disappointed.

Saturday, April 25, 2015

Anger Emotions Tired Changing

Pretty much, the title says most of it all.  We are going day by day now, one day at a time.

Treatment was supposed to start on Monday.  I made phone calls to the Coordinator of Care at both the VA and the UW Hospitals and they both concurred on this.

We were told that we'd get called by Thursday or Friday at the latest. I spent Thursday doing things around the house.  By late Thursday I took a short walk into the woods while Rich slept.  

His surgery from Monday was still bothering him.  He couldn't pick heavy things up or bend over easily, but we were learning how to flush Miss Peggy the PEG tube.  It looked to be healing quite well.

By Friday morning I was tired, so bone tired that it felt like it took all of my strength just to do the chores.  I didn't mind the rain.  But I did mind feeling as though I were dragging and elephant along through the mud with me.

I'd been reading the literature sent to me by the Caregiver Coordinator from the VA.  I was suffering some Caregiver burnout and here we hadn't even begun to start the 'tough' stuff.  How in the heck was I going to make it through weeks of Radiation and Chemotherapy and be kind and understanding?

Could I do it?

We'd already been seeing that in the fact that both Rich's emotions and mine were running wild circles around each other.  He'd be up, I'd be down. 

I wondered if I was truly going to be up to this task before me.  We still had no true idea of what we were getting into.
We'd heard a lot about 'how tough' things were going to get or 'could' get, or 'might' get.  It all depends on the individual.

Enough was enough.  Rich asked me if I wanted to go car shopping.  I jumped at the idea as it was better than sitting in the house thinking gloomy thoughts on a gloomy day.

We went to LaCrosse and took care of our transportation issues. We have been frugal folks for years and we had decent vehicles but the Subaru was having mechanical issues.  In fact it seemed as though they were going to be non-stop at this point.  Fixing it completely would be about as much money as it was worth.  It was 13 years old.
Rich did something I never expected him to do ... not ever.
He bought me a brand new Red XVCrosstek made by Subaru.
He made it clear that he was buying me a new car.

It may seem very imprudent to those who don't know us.  But traveling 190 miles a day was going to be too iffy with our aged vehicles.  

We were both exhausted when we got home from LaCrosse Friday night.

This morning I was getting ready to go outside and do chores while Rich was talking to his mother on the phone.  She must have asked something about the PEG tube.

Rich replied that he had to flush it ... then he had to do some more reading about it.  We both had some questions for the doctors on the follow up appointment.
He then said, "Well she doesn't help me at all, she says I'm on my own, ... ornery old heifer! Yep, here I am, left like an old sheet hung on the line to dry..."

I closed the door and stepped outside.  I was fuming.  How dare he say that?
I did the chores and filled water tanks along with buckets.  I moved bales and prepared everything for the evening chores.  I had to go do a 12 hour overnight shift and he was going to have to work through chores on his own.

When I got back inside, I'd calmed down a bit.  I was still ready to bite someone's head off.  But I held my tongue.

Rich picked up the menu from Iguana's Mexican Street Cafe and asked me a question about what pico de gallo was.  I gave him a stare, it could have probably peeled the paint job off from our new car that we would pick up Monday night.  
Iguana's Mexican Street Cafe is owned by the fellow who sold us the car, it is his and his wife's business.  

He must have figured it out.
I grimaced, "Do you have to be so mean about it?  I don't help you at all? What about what I do here, what about," ... I tossed my hands in the air.

His mouth formed an "O".  Then he nodded.
"I'm sorry," I said, "I just with all of this..." I shrugged.
"I know and I hope you know that I was joking, I was kidding."  He thought for a second then said, "With what we are going through, I'm guessing we are going to go through a lot of this.  Boy, it is going to be hard."

We.  We are going through.  That was the key.  It wasn't just him, it was us. In a way it was changing our relationship and I think for the better in some ways.
We were beginning to think more of each other's personal feelings.  We were recognizing our ups and downs.  We were changing, our marriage was changing.

Thursday, April 23, 2015

Communication & Being Direct

Rich made it home safely.  We spent yesterday talking and getting some ground rules set up for the upcoming weeks.

I was about to go out the door to do chores.  He was in the other room.

As I put on my coveralls I asked him when he was going to 'flush' his PEG tube, or as we call 'her' now Peggy.

He was still very sore from the surgery and it was hard for him to move to bend over and get things. 
I'd helped him get his clothes on and put on his shoes when he got up.  We both knew that he'd feel better in a few days, but for now it was something that needed being done.
And well, I was beginning to understand a bit of the upcoming role I'd play in the next few months.

So his answer to my question was very vague...he pretty much didn't say yes or no and then mumbled something about he "might need some help with Peggy".

So I asked him directly if he wanted my help and needed my help before I went out and started to do the chores.

He said yes.  I told him that he needed to be direct from this point in.  IF he needed help, he needed to ask that of me directly because I couldn't decipher what he needed when he was vague.  If he wanted assistance for something to say so and not just assume that I would figure it out.

He laughed and said, "OK, I WANT you here right now, this instant!"

We both chuckled at the humor.  "Not quite that way," I directed him.

We flushed Peggy and when I got in from chores we'd change the dressing together.

During the time I was outside he made multiple phone calls to the VA trying to get some other items taken care of.  

As I made my rounds of taking care of hounds, mules, donkeys, and the Dexter Cattle, I thought how quickly our lives had changed in 5 short weeks.

My mind then went into the chores and enjoyed the noises of the outdoors. Robins, Redwing Black Birds, House Sparrows, braying mules and donkeys all took over and my worries were put on the back burner while I worked.

It took about an hour to get everything done my way.  Rich does chores his way, I do them my way.  Mine takes longer because I am always doing them so I don't have to come back in an hour or so and do watering.  
I puttered around and took my time.

When I got back inside Rich was ready to change his dressing on Peggy.
We worked together, he could do it himself, but I think he just wanted me there as his back up.

He explained what he was doing and we reviewed his swallowing exercises as well as 'how he would feed himself' when it got to the point where he wouldn't be able to swallow even pureed foods.  

"The nurses said that I am going to get pretty sick," Rich said.  
I nodded, I already knew that.
"I wonder if there is anyone around that I can hire to help with chores. I can't have you trying to do it all."

"Thank you for thinking that," I said.  "I won't be able to do it all.  Not at all."

Baby steps.  A few feet forward a few steps back.  We were starting to learn a new way to live life together with a new method of communication.

We both agreed that it wasn't going to be easy and we wouldn't always be polite with each other.
We'd have crappy days and we'd be nasty with each other.

And then we would have better days also.

Tuesday, April 21, 2015

Navigation of the Health System

Last night in the mail I got a letter for a scheduled appointment that did not show up on the site.

I've learned quickly that the site is slow to catch up to appointments that are made.  Yesterday's appointment has not shown up yet.  It makes me scratch my head a bit.

Now I see appointments popping up like crazy, yet yesterday's surgery is still not showing.  

So I called my new and best-est VA Hospital friend, Margarette.  She promised to have the Head Nurse from Oncology - Chemo call me.

This is only possible because Rich and I not only gave them a copy of our POA Health Care papers, but also because we made sure that we signed paperwork that allowed the VA to share medical information regarding my husband to me.

If I didn't have this paperwork already in place, I'd be sitting in the dark wondering and hoping that my husband who is not good at details would remember anything verbally told to him. 
I am my husband's medical secretary and health advocate. 

I am still going to trying to juggle part time work scheduling around his appointments,... more than likely I'll be doing weekend hours as long as I can handle it.

My job is trying to be accommodating which I really appreciate.  I've been scheduled for nearly 30 some hours a week for the next couple of weeks.  Since I couldn't give them dates for start of treatment, they scheduled me.

Dr. W. said that Rich could actually drive himself for the first week or so.  
Then the head nurse at the Rad department said they would not let him drive home because he has to take meds for relaxation during treatment.  
Hubby is very claustrophobic and they need him to be absolutely still for Tomo Therapy.

Today I am learning how to be an aggressive Caretaker. I made a spreadsheet of all the Social Workers and Care Coordinators with their phone numbers and their emails.

I've shared it with Rich's daughter ~ which reminds me that we need to add her to the list of people who can get medical information from the VA regarding her father.

She will be an important part of helping her Dad through this treatment, as well as her children who Grandpa Rich adores.


Monday, April 20, 2015

Today he meets PEG & Other Thoughts

Rich left for Madison this morning.  
He has surgery to put in his PEG or also known as Percutanous endoscopic gastronsonomy tube.

This is for later on for when he has trouble swallowing due to the Tomo Therapy aimed at the cancer tumor in his throat.  It is a procedure that is not difficult but will require him to stay overnight at the VA hospital.  He was told he could drive himself and then come home at some point after release tomorrow.

It is a big step for us.  I say 'us' because we are both going through this.  No, I do not have cancer and I do not have to go through what things he is going to go through.
But I am his support and his wife so every step of the way feels as though it is also happening to me.

I spoke to one of the Veteran's Wives support Social Workers today and she told me that this was an okay way to feel.  It was a 'we' not a him. Although he would have the procedures it was important that I be his back up.  Well that is how it has always been with us.

I took the day and cleaned closets, and sorted things.  It was a good day to be busy inside and try to organize all those things I've been meaning to take care of.

It feels oddly quiet around here and pretty peaceful.  I am having one of my first days of not having to worry about what is happening to him.  Well, not entirely after all he is having surgery.
I almost feel guilty for having a day to myself.

Margarette [Veteran's Wives Social Worker] told me it was important as a Caregiver to take time for myself.  She is sending me a packet of information regarding Support Groups for me.  There is even an online support group just geared for wives who are married to veterans with PTSD.  I can sign up for a 'Caregivers' course online and learn some coping skills.  I wished I'd known this a few years ago.  After treatment is over, I can become an 'Alumi' and stay with the group.
I 'read' this from her conversation, that I too support others with experience gained from cancer treatment and dealing with severe PTSD.

I am very willing to do this.  

I may even be able to get some 'respite' help if things are difficult and I just need to do some me things.  This would come from my local county Family Services.  
I told her that I had a good ... and very small rural community that has already reached out for some of this along with Rich's daughter.  I started developing a community support group as soon as I learned his diagnosis.

I explained to Margarette that one of my self care things to do was hike, take photographs, be in nature, and ride my mule.  I told her this was something I'd discovered early in our marital relationship and that Rich sometimes resented it, but also understood it.

My biggest concern was not knowing how things were going to go.  But knowing I have people I can call on and even talk to via the internet is a relief.  Whew.

Steph, my stepdaughter is on board with me.  I can't say enough how supportive and helpful she is when I call her up and just complain and babble.  She listens and she understands.  After all, she grew up with Rich being her dad and developed her own coping skills.

My neighbor called this morning and asked if I could watch her kids tomorrow night...what a delight, I love doing it.  I told her that I would be alone this evening and perhaps I could walk up to her house and we could just hang out a bit....and she invited me for an early supper.  How excellent, because I just opened the frig and for the life of me, could not figure out what I might even think of having for supper...!
People can be awesome!

I am working on me.

Oh.  All the chores went smoothly in the rain and cold.  I just went out and did it with my mind on chores and the worries of all other things sort of melted away as the Dexter Cattle bellowed, the mules and donkeys brayed, and the hound dogs barked.

Sunday, April 19, 2015

Mask Day


Not Tax Day.  Well we were not thinking about that at all.  We had appointments for the 'mask'.  I'd looked up what this CT mask was all about but still wasn't quite sure how it would be used.

Jackie the coordinator met us in the waiting area and sat us down for a conversation.  She began by explaining how the 'mask' would work and how the treatments would be coordinated.  

Rich told her the 'the guy nurse' from Oncology at the VA said that this would be a 'calk walk' for Rich because he was a Tough Guy.  And that the feeding tube couldn't be put in right away because they didn't have openings.

Jackie's eyes grew a bit large and she said quietly.  "No Rich, this is no cake walk.  It is going to be rough and tough, there will be some bad days, but we are here to help you make it through it.  Your throat will become so sore as to be nearly unbearable at times.  Your mouth will get dry, you will get thick nasty mucous.  You will get tired and feel drawn out..."

She then began to explain how we'd attack these issues head on.  Salt/baking soda/water rinses.  Special mouth wash, special creme for his neck, ... she went on to explain how to take care of the mouth and how diligent he had to be about his teeth.  

Rich asked her how sick he'd be from chemotherapy.  She said that the strength of the chemo is not the same as they would administer for something like breast cancer.  He wouldn't lose his lovely hair.  She smiled and wanted to know where I stood in all of this.

"I am his back up support.  I've got his back," I said.  Rich glanced over and smiled.
"Yeah, she is."

Rich then left for the 'mask' fitting.

Jackie asked me if I had questions.  
"Oh sure I do, but I don't know what I am getting into."  I nodded at my husband who was walking down the hall, "He really needs a lot of care, more than he thinks and I mean that... before he was diagnosed."

Jackie nodded to herself as if making a mental note.  She said her card was inside the binder she'd left me and if I ever needed her, I could call.  She also assured me that she would see us often during and after treatment.

I read through the booklet that Jackie left us.  There were blender recipes and articles on self care.  
I decided I best start by studying everything they had to give me.  I was facing a potentially very long uphill battle.
Don't get me wrong.  I love my husband, but he really isn't as tough as he thinks he is.

I'm not tough either.  But it looks like I better start working on it.
....And my Mask too.  

Saturday, April 18, 2015


From my journal April 10th

Well it wasn't really D-Day as in reference to the invasion of Normandy. But Rich used it as slang to describe how we were feeling on our drive in to Madison.

We had to find the WIMR building and that got a bit tricky.  We first pulled into the UW Hospital and Clinics parking area.  After asking a valet parker where the heck we were supposed to go, we were directed to the infamous Lot 74.

We had been instructed to park in an slot assigned for PET scans.  It was raining softly and we hurried across the lot to get under the canopy for the building.

We stepped inside and I tried to read the instructions on how to find where we were to go to check in.  Someone stopped and helped direct us.  
We sat quietly in the waiting room.  A tech came and got Rich.  She told me it would be at least an hour and 45 minutes before Rich got back.

I read a National Geographic from cover to cover.  I played a game or two of solitaire on my Kindle.  Then I twiddled my fingers.

Soon enough Rich came through the doors, he'd taken his med for anxiety to help him relax.  He is claustrophobic and he gave me the thumbs up.  The tech said he did very well, he slept through most of it.

We decided to go to the cafeteria and get something to eat before we headed over to the Carbone Cancer Center to meet with the Radiology Oncology people.
Getting lost in the UW Health system in Madison must be a regular thing. We had people guide us from one place to another.  

Nervously we sat in yet one more waiting room.  We didn't have much to say.  The question on both of our minds was simply.
Where was this Stuff?
Was the news good or bad?

We didn't wait very long before a male nurse got us and took us into an examination room.  He went through Rich's vitals and then went to get another doctor.  That doctor came in and actually had the honor of giving us some good news. 
The cancer had not spread.  It was local.  In the left tonsil and in the left lymph node.  It wasn't anywhere else.

Then Dr. W. came in.  He affirmed the PET scan findings and put the scan from the CT and the PET up on the monitor to show us exactly where the cancer was and how it was first discovered.

Our relief was overwhelming.  Dr. W. then delivered the next part of the news.

A treatment plan.
So far as he could see it, Radiology would be 5 times a week.  Chemotherapy would be once a week.
A mask of Rich's head and neck would have to be made so they could program the Radiation Treatments and tailor the treatment for his therapy.

The treatment would be Tomo Therapy.  I could see that Rich's spirits were lifted as well as his attitude.  Dr. W. expressed concerns about our long drive.  He felt it would go fine for a few weeks but then we might want to consider staying closer to the hospital.  
He gave Rich the broad over view of what to expect during treatment.  He included the fact that the throat would get so sore that eating would be darned near impossible and he would have to have a feeding tube.  

He cautioned also that no matter how awful it was to swallow, it was important that he do so and they would help with meds to make that possible.
He cautioned that things would get pretty tough and pretty nasty and that even tough guys had really bad days with this treatment.

Then I will never forget Dr. W. leaning over Rich and touching him on the shoulder.

"If you stick with me Rich through this treatment, I will cure this cancer."

I sat stunned in my chair.  Did I just hear that right?  Wait, wasn't cancer incurable?

Dr. W. went on to explain that Cancer was a big bad name that encompassed what he felt were thousands of 'cancers'.  Every cancer was different.  This cancer had the HPV-16 'marker' which had a better rate of cure and survival.  This cancer had been caught early.  He felt good about the outcome.

We made it back to the car and Rich handed me the keys.  It had been a very long day.
We made it through D-Day with a prognosis that was good.
Well, good for us considering.

The sun was brighter, the sky was bluer, and Hope not disaster filled our heads.

Friday, April 17, 2015

After the Teeth Pulling & PET Scan Notification

From my journal April 6th

Crazy.  Our days and nights have been a bit of hell.  Rich sits and stares out the window.  He goes from being angry to being sad and depressed within hours.

He won't admit it, but the oral surgery did hurt and he'd refused meds for the pain.  Tough guy.

I've made shredded meat stews and other easy to eat foods for him.  I avoid the chips, a food he loves.  I suggest he try and Oreo cookie dipped in milk to soften it.
He waves me away.

"Life sucks," he finally says to me.  "I should just ...," he stops and says nothing, then gets up and walks out of the room.

I try to get him to watch a program on Netflix.  He shakes his head and mumbles that he is going to nap.

I need to go to town and get some ice cream perhaps to cheer him up.  My Grandmother always said that Ice Cream was the cure for everything.

I have a list of simple groceries to get.
I park in the Jubilee parking lot and am suddenly overcome by grief or emotion.  I sit in the Subaru unable to move.  I want to cry I want to scream and throw things, I want to be... I don't know what I want.

Tears slide out the corners of my eyes.  I wipe at them and stare off for a bit taking breaths.  
Why should I be upset right?  What right do I have to be emotional?  I do NOT have cancer.  I am not the one who has IT.

My mind goes blank and I wait for a bit to get things under control.  I step out of the car and shut the door.

I start towards the store.  When I get inside I cannot recall what I was there for.  
I grab my list out of my pocket and find myself wandering around somewhat aimlessly.

When I come home with ice cream Rich's face lights up like a Christmas Tree.

The phone rings and it is the UW Hospital calling.  They have scheduled the PET scan for the 9th of April.  A nurse will call us with details later.

Well there we go.  We made another day.

Outside I find a beautiful crocus that has opened.

Taking of The Teeth

From my journal ~ April 2, 2015

Our drive to Madison was fairly normal, we talked about the weather and the farm fields we passed.

The tooth surgery wasn't going to be a big deal or so we thought.  Heck, it would save Rich from getting infections and all of the other awful things Dr. D. had described that come along with Radiation treatment.

We still we on edge about 'what' or 'how far' the cancer 'may' have gone. The waiting was wearing on us.
He'd get short and say something snarky.

I'd get frustrated and throw something when no one was around.  Let's face it, not knowing if the cancer is local or spread all over was unnerving. Nothing would be settled until we had the 'almighty-all knowing' PET scan.

This had to be approved through the VA to be done at the UW Radiology Department at Wisconsin Institutes for Medical Research or ... WIMR for short.

But for today we had to concentrate on the oral surgery.

When Rich got into the dental chair, a whole slew of people came in the room wearing gowns.  Dr. D. showed Rich his x-rays from last time and said upon review they would take the 4 bottom front teeth.  There was some bone loss there and they had to go before the Radiation.

Rich protested a bit.  "Doc, what the hell am I supposed to eat with?  I don't have many teeth anyway!"

Dr. D. said, "Rich, better to lose them now than during treatment, the risk factor for infection and troubles is high if we leave them.  I'll give you some bright beautiful new ones after you are all done with your treatment."  He grinned and gave Rich the thumbs up sign.

A gowned nurse ushered me out of the room to the hallway and told me to wait in the waiting room.

A bit later Rich came out with his face stuffed with a wad of gauze.  We made the follow up appointment and headed home.

He motioned for me to drive.  I figured I would.
Traffic was heavy when we got on University Drive.  
Rich started to motion to me and in some garbled way tried be the back seat driver. 
Naughty me, I ignored him, reached down and turned on NPR to listen to the news.

The drive home was silent except for the radio.  Rich reclined in the passenger seat.

Thursday, April 16, 2015

Meeting the Chemo Oncologists for the first time

March 31st ~~~ From my written journal.

Today we meet with Oncology.  We are ushered into a room with a Dr. R.  He has a foreign last name and Rich made a comment about it.  He wrinkles his nose in disgust.

We are called into the room and a very good looking Dr R. greets us.  Yes he is not white, but he is an immigrant doctor with nearly perfect English.  His manner is laid back and his tone is quiet.

Rich asks if I can use our digital recorder to record this meeting. 
Dr. R. says of course, he wishes more of his patients would do that.  It is helpful when you are not sure what was said, he explains.  Our first meeting is full of so much information it is hard to process it all.

We proceed.
Rich has Cancer.  

As I type this I'm not sure if I should give cancer a captial 'C' or not.  If I do, I feel I am making the cancer more important or powerful.  I'm not going to capitalize it.  I hate IT.  See there I did it again in a way.

The cancer is called Squamous Cell Carcinoma with left Tonsil involvement.  I don't know how much involvement and the doctor doesn't go into that.

He tells us that the cancer is HPV-16.  The 'good' news is that this type of cancer responds very well to radiation if treated at the same time with chemotherapy.

Cancer that comes from a virus that is in the human body.  In some people it simply never does a thing.  It just exists.  

In others it shows up as...the doctor glances at me and says "As Cervical Cancer."  

I am familiar with that virus, it had been all over the news a few years ago.  A vaccine had been produced for it to be given to kids around the age of 12 before they become sexually active.

Dr. R. goes on to explain that this virus is now showing up in other cancers.  He motions at Rich and says this HPV-16 has shown up as a marker in his cancer.  Rich asks what a marker is and Dr. R. carefully explains how they took his biopsy tissue and stained it for different things and one stain showed this 'marker'.

I sit back and am impressed this doctor is being careful and explaining everything.  He apologizes and says he has to answer a page.  He asks that we think of what he said and when he returns he will try to answer any questions that we may think of.

I talk to Rich and he asks me when are they going to call it a Stage?  What was staging?  I tell him I think it is something they will do after he has a PET scan.

Dr. R. comes back in to see us and apologizes.  Rich asks about the PET scan and Dr. R. tells him that Staging is something that is discovered by the PET scan.  He will be injected with some 'sugar' solution that will excite any cancer cells in his body and make them glow brightly on the scan.

The scan will be from his head to below his groin.  Rich is surprised. 

"It is only in my neck, why the rest of me?" 

Rich is a bit agitated now.  He insists it is only in his neck and that is what ENT told him.  

Dr. R. calmly answers his question by explaining that to do a thorough exam, they must make sure that the cancer has not spread.

At that point another doctor comes in, he introduces himself and picks things up from there.  

He explains that yes, the cancer is in Rich's throat and tonsil, possibly the lymph node which is swollen.  And they have to make sure the cancer has not traveled to other portions of his body.  

That could make a difference in treatment.

Rich shakes his head and states quietly, "If there is cancer other places, I won't have treatment."

Both doctors nod at this and the new doctor sits back.  

"Mr. Ewing, we cannot cure cancer, we simply can't.  But we can give you a longer life with treatment.  Non treatment is your option of course.  But let's have the PET scan and then we can review our options."

He then asks Dr. R. if he'd discussed the 'feeding tube' with Rich.  I shudder, as I'd read the literature on throat cancer.

"Feeding Tube?" he asks.

"A feeding tube will be possibly be needed and it will be inserted into your stomach.  Radiation to the throat sometimes makes it impossible to eat and we need to feed you nutrients in order to keep your strength up."

  [I think, to keep you alive too...]

Rich's eyes widen and he nods.  I think we've suddenly lost him in a way with too much information overload.  The cancer word is now looming in his head with a Capital C.  Cancer.

Both Rich and I have had this discussion before.  It is an easy one to have when you do not have cancer. we don't want treatment, no long prolonged suffering from chemo and radiation.

I see now that depending on the type and location of cancer, treatment can be helpful.  Yet the long difficult painful treatment looms in front of us and it is scary.

Now the clock seems ticking down towards the next big appointment.  The PET scan.  It will tell us more information.  I fear it and want to find out at the same time.  Rich wants to find out.  But he has to come back and see Dr. D., the dentist to have two teeth pulled.

Apparently PET scan or not, it sounds like the doctors had decided that the radiation treatment will affect his mouth and questionable teeth must be pulled.

Our drive home is mostly quiet.  We stop and eat.  It is another beautiful Spring day but it seems we aren't enjoying it at all.

Wednesday, April 15, 2015

Enter the whirlwind

We checked in at the Kiosk for the Dental Clinic.  The printer shot out future appointments and we both looked at the date.
March 31st.
MAD Oncology.

So things were moving quickly and we were not even aware of any meetings with Oncology.

We sort of had to chuckle at the 'shorthand' that the VA used for its appointments.  Appointment at the Madison VA were shortened to MAD and then a dash followed by the clinic or doctor a patient was seeing.

Dr. D. presented himself after x-rays and did a dental exam.  He told Rich that he'd be removing some teeth.  Because of the Radiation Treatment oral issues can happen.  Removing teeth that are not in good health was standard protocol.

Dr. D. is quite the character.  He explained some things to Rich but wouldn't go any further to say that he has known people with this cancer that had done well and tried to set our minds at ease.

Of course he couldn't tell us what he knew that would be up to the Oncologist. We left MAD Dental and headed home knowing we'd be coming back in a few days.

Our drive home was pretty quiet.  We watched the last of winter melting away in the farm fields.
Rich asked some questions.
"Did Dr. D. say he was taking just two teeth?"
"Now why was that?"
"They could cause issues once you started Radiation Therapy," I replied.
"Oh, I don't remember that."

I decide my next step was to get a digital voice recorder to start bringing to our appointments, especially the upcoming one with the Oncology Department.  The 'MAD' one.

Tuesday, April 14, 2015

The Call

After nearly 9 days of waiting, I emailed Rich's Primary Care Provider and asked if she had any information on the Pathology report.

The week and weekend had been agonizing.  Little things set both of us off and we snapped at each other.  We'd stop and apologize.  We were on edge.  
He'd called his family to tell them but we really didn't have anything to 'tell'.

It was like giving bad news without details.  Everyone always wants details.

What kind?

What stage?
Can they treat it?
When is surgery?

These were all questions we didn't know ourselves.  

With the internet so readily available, I started to do some research.  I wasn't sure what I was looking for so it made the search regarding 'Throat Cancer' much worse.
Grim stuff.  And if one dared look at images, even more grim stuff.

Finally the phone call came.  The person on the other end asked for Rich and I handed him the phone.

I wanted to pick up the other line and listen.
I felt pretty foolish and thought that would be in invasion of privacy somehow.

So I waited, and then went outside to give him privacy.

When I came back in he had hung up the phone.

"What did the doctor say?" 
He shrugged.  "I have cancer in the throat and it had a marker or some such thing.  Like R16."

"What's that?" I asked.
"How the hell should I know?" he was exasperated.  "Why didn't you just pick up the other line and listen?.  They said something about a PET scan and that would tell us more."

This was my 'ah-hah' moment, the second I realized that I would have to be involved in every doctor-patient conversation.

It took me a while to figure out that my email to his Provider had got the ball rolling as far as someone calling us.  I compared the time the email was acknowledged and read to the time of the phone call.

9 days had passed and we were still in the dark.
Somehow it felt like a lifetime.

Both of us were swimming in emotions.  Good one moment, angry the next. We were short with each other.

A day passed.
Another phone call. It was the VA Dental Department calling.  Could Rich come in for an appointment today?

"No," I replied, "tomorrow?"  Tomorrow it was.  It was in regards to his recent diagnosis.
I explained to the gal on the phone that we didn't know the diagnosis, could someone please tell us?

Finally Dr. D., the dentist got on the phone.  "Squamous Cell Carcinoma with Left Tonsil Involvment."  That was what he could tell me.

Well, at least there was a name for it.

I looked it up and decided I needed more information.  One piece of information I was able to glean was that before treatment, which would involve radiation therapy, would be to see a dentist to take care of any dental issues.

We'd be off to Madison again the next day.

Monday, April 13, 2015

And the Doctor said Cancer

No one forgets the day they have been diagnosed with Cancer.  Cancer with a capital letter as if it is so important.
Yet it is.

It changes many things that simple ugly word.

March 13th, 2015.  Friday the 13th my husband went to the VA hospital in Madison to an ENT check up for a lump on his throat and some sinus issues.

They did a CT scan.  The ENT people then did a biopsy.  They told him it was cancer but didn't know more than that.  The biopsy had to go to Pathology.

He pulled in the driveway.  I'd stayed at home to do chores after all this whole appointment was pretty routine right?

He parked the car.
He walked slowly towards me.
He shook his head slowly.  "Cancer.  They said I have cancer."

The sun was warm, it was pleasant.  I could hear the birds singing.  

No, the birds should be falling out of the sky and the clouds should rush in with a huge thunderclap and lightening.

But it didn't.  I felt shock go through my body.  And I had no words to say of comfort to my husband.  I couldn't think of a thing.  So I took his hand.

It was the 'C' word.  That awful dreadful C word.  The word that nightmares and horror stories were made of.  Those stories that showed children with no hair, people with hollow eyes, thin, sick, ...but people out there and not the person in front of me.

When the diagnosis comes like that, imagination flies and goes wild.  

And it doesn't get better because suddenly we were immersed in trying to figure out what this Cancer was.  Of course no one knew.  One of the ENT doctors assured him that he'd call as soon as they got the Pathology Report back.

So began days of waiting that felt like weeks.  A Cancer with no name.  We felt as though we were in emotional limbo and we went through our daily lives like living Zombies.  I wasn't sure what to say to comfort my husband and he wasn't sure he wanted comforting.

And so the Journey began.