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.
What in the world to do?
We made our radiology appointment yesterday. Rich was wobbly on his feet and still very stressed out over the reaction he'd had last week to the second line of chemo that he'd received.
We were late for our chemo appointment as both RAD and Chemo were scheduled for the same time.
Nurse Jackie noticed right away that Rich was in a wheelchair [he didn't feel he could walk safely to the Infusion Clinic].
Rich is a veteran with PTSD issues from the Vietnam War. The stress of chemo along with the health issues of going through chemo and radiation therapies at the same time were taking a huge toll on his emotional status. Enough so that when we got to the Infusion Clinic that Nurse Jackie realized that we had a pretty huge problem.
If a person is extremely stressed and emotionally distraught, chemotherapy will only worsen any healing that can go on.
Nurse Jackie recognized what was happening with Rich and immediately began to assess him. After some phone calls and a conference with his Chemo Oncology doctor, Dr. R, it was decided the best and safest thing to do was to get him admitted to the Mental Health floor where he could get some help yet still be close enough to be treated with Radiation.
Along with that he could get help with his emotionally distress so he could be prepared for on going chemo, which he does want to continue with.
It seemed like an easy enough and simple enough plan.
6 hours later we were still awaiting a decision.
The mental health people didn't want him because he had a PEG tube and used a CPAP at night.
He was taken to the 4th floor and they didn't really want him as he had been labeled as having mental health issues.
We finally got him settled on the 4th floor and Steph and I went home.
As of noon today his attending nurse on the 4th floor felt he should be kept on that floor because of his past issues with chemotherapy. But the powers that be decided he should be on '2B', Mental Health.
No one but his nurse has had interaction with him. The admitting physician came in and gave him a quick once over and since he was not ill enough, thought he could be transferred.
No one from Mental Health has seen him either. A man in pain from ongoing radiation and extreme anxiety from chemo, left in a room with his thoughts of confusion and more anxiety.
It leaves one to ponder what the Veteran's Administration has in place for veteran's who have both medical issues and mental health issues. At this point it seems that they have no good protocols in place.
The VA works well, when it works. It needs constant shoving, pushing, calling, and nagging when it comes to letting someone fall through the cracks.
At the moment, I am at home trying to push, shove, nag, and get answers. My wish would be to sit with my husband right now and offer him my support.
The male nurse we met a couple of weeks ago in the Emergency Dept stopped me yesterday and asked 'Who is supporting you?' I nodded towards Rich's daughter, Steph.
Truly though?
I feel as though I am in free fall without a safety net myself.
I am only left with questions that are unanswered and doubts that linger.
Last week I nearly lost my husband to an Anaphylactic reaction, this week I lose my husband to the inner bowels of the VA hospital who seems to 'not know' what to do with him.
I know I can't bring him home right now, and at the moment I am too exhausted to drive 2 hours one way to be with him.
The severity of his Anaphylatic reaction last week on a scale of 1 to 4 was a 4, this told to us by his chemo doc yesterday.
I can probably say with some confidence that my stress level at this moment is off the charts.
I feel helpless and frustrated...and exceptionally drained.
Yet, tomorrow is another day right?
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.
