karenulijohn

This afternoon, we met with Harvey’s new oncologist, Dr. Vijay Suhag.  We were very impressed.  He is 35 years old and received his medical training at the University College of Medical Sciences in New Delhi, India.  He took his Residency at Drexel University College of Medicine and Fellowships at Georgetown University Hospital.  He is very friendly, kind and caring and took a great deal of time talking to us about Yervoy, its makeup, and how it works.  He said that he had been reviewing Harvey’s file and felt like he knew him, and was glad to finally meet him in person.

Essentially, Harvey is having a classical reaction to Yervoy.  The autoimmune process can cause inflammation anywhere in the body, but in his case, it is affecting his colon.  Collitis is the number one serious side effect of Yervoy and a condition which almost certainly will mean the cessation of further infusions.  Since the drug can remain in the body for up to 18 months and has a cumulative effect, the next infusion would probably cause even more damage.  Some patients have experienced a perforated bowel and even death.  The decision was taken, therefore, to end the active part of the study.  I was relieved, but my relief was nothing compared to how the tension in Harvey’s face and body just seemed to ease away.  He had been dreading facing another infusion with the accompanying side effects if they were to be this debilitating.  Dr. Suhag prescribed a stronger anti-diarrheal medication and said that he would need to “eat like a baby,” meaning small meals more often made up of soft and easily digestible foods.  Other than that, he really does have to tough it out.  Honestly, I think he can do that now, knowing that he need not go through it again.

As part of the consultation today, Dr. Suhag said that Harvey had come very close to being admitted to the hospital on Memorial Day because of his condition.  He also gave us the results of the recent CAT scan, which for the most part, were very positive.  He said the collitis showed up very clearly, as did some gallstones, but, on the positive side, no change in the circumference of the ascending aortic aneurysm and no sign of cancer.

Even though he will no longer be having infusions, he will continue to be monitored by the study.  He will have blood draws and scans at periodic intervals.  One of his first questions of the study coordinator was “when can I have the port removed?” For him, that will be a milestone marking the end of a painful and frightening period in his life.

Despite beginning a course of antibiotics, Harvey ran a temperature of 102 on Sunday night.  He was very agitated and uncomfortable, and although he took Tylenol and we applied cool compresses and an ice pack on his neck, it took some time for the fever to abate.  It was early Monday morning before either of us was able to get to sleep.  Around 10:30 AM, we telephoned the on-call doctor, Dr. Reddy, and he advised us to go to the emergency room so that Harvey could be properly evaluated and tests could be run.  Dr. Reddy assured us that the ER does a good job of triage and usually gets cancer patients out of the waiting room quickly.  So, I dropped him off at the door while I went to park the car.  By the time I walked through the door, they were calling his name.  We were escorted to a small cubicle behind the check-in desk where a very nice young (and handsome) male nurse began asking questions.  Harvey looked at me with something of a pleading look, and I took over describing symptoms and timeline.  I was a little disturbed by the fact that the nurse did not know anything about Yervoy.  In any case, he asked us to wait in the waiting room, and they would call us when a room became available.  We had just gotten situated when this same young man came over and asked Harvey why he was sitting down because they had a room for him.

Once Harvey was gowned and settled on the gurney, Erin, a very pretty and friendly nurse came in to access the Power Port and draw blood.  A little while later, a technician with a portable X-ray machine came in to take a chest X-ray.  The ER doctor then came in and said that all of the tests look normal, blood levels are within range and except for some dehydration, he can’t find any infection that would cause the fevers.  In consultation with Dr. Reddy, they determined that his condition was a result of the Yervoy.  We received this news with a mixture of relief and disappointment because we now know that he just has to “tough it out.”  They gave him a liter of saline intravenously and then sent us home.  This entire process took about four hours.  Harvey slept most of the time and I sat on the hardest chair in the universe and did eight word search puzzles.  When we got home Harvey went immediately to bed and slept most of the rest of the day.

I am going to be gone for a good part of the day today, and I have given Harvey explicit instructions that he is not to attempt any home or garden repairs while I’m gone.  There are a couple of things he can do at the computer, but that’s it!  I wonder if I can trust him.

The side effects that I reported in my last blog have continued unabated.  Harvey began to experience chills and fever along with abdominal discomfort and gastric problems.  The smallest task drains him of what energy he does have, and he must lie down.  He sleeps for hours at a time and has complained that he wants this to “be over.”  Yesterday, he went to lay on the bed, and he could not get warm.  In fact, he was shivering, so I piled on blankets and covers until he cried “uncle.”  He finally got warm, but when I checked on him again, he was abnormally hot.  His temperature had soared to 104 degrees F.  He insisted that I go to my massage appointment, which I did, but the entire time, I kept thinking about what he was experiencing.  Finally it came to me.  He was following the same path as when he had cellulitis.  When I got home, I insisted that he call the on-call Doctor and tell him what was happening.

We spoke to Dr. Reddy, a colleague of Dr. Colbourn.  He asked a couple of questions, to which Harvey gave monosyllabic answers that really did not adequately answer the questions.  Dr. Reddy began to say that we should watch the temperature for a couple of days, and if it doesn’t retreat, to call him again.  At this point, I could not hold back.  I interrupted the conversation, saying that this had been going on for over a week, and I described what had occurred after the last infusion, mentioning the cellulitis in Harvey’s toe.  That got his attention.  I continued to tell him that though we can see no outward signs of an infection, his symptoms are following the same track as before.  To make a long story short, he prescribed a quinolone antibiotic to be taken daily by mouth for ten days.  We are hopeful that Harvey will begin to feel better in the next day or two.

Our lives have changed dramatically, particularly in these last few weeks.  It’s very quiet around here except for the television which I keep on for company.  Today was my last Sunday playing for the Grace Lutheran Church in town, and Harvey didn’t feel well enough to attend with me this morning.  After the service, one of our neighbors mentioned that he noticed one of our sprinkler heads was broken, and a geyser of water was springing up on the side of the house.  He even offered to come over later to fix it.  Of course, I thanked him profusely, declined the offer, but told him how grateful I was that he had discovered something that needed fixing.  If there was anything that could get Harvey to spring into action, it was the need to fix something.  Sure enough, he worked himself up to go out and dig up the offending sprinkler head, and replace it.  He was so happy.  Now he is sleeping the sleep of the just!

Next weekend, we are planning to drive to the Bay Area to celebrate our granddaughter’s 16th birthday and our grandson’s graduation from middle school.  I am hoping Harvey will feel well enough to go shopping for some clothes that fit.  He has lost about 35 pounds and all of his clothes are kind of droopy.  He said that, instead of “achy, breaky heart” he is a “saggy, baggy fart.”  I love that self-deprecating sense of humor!

Last night I was watching the NBC Nightly News with Brian Williams and he began talking about the success doctors were reporting with the use of a new immunotherapy drug.  That got my attention, and sure enough, the segment detailed some of the successes they have seen on advanced stage melanoma using Yervoy in combination with another new drug.  The following URL will take you to the article and video.  http://www.nbcnews.com/id/51894974/ns/health-cancer/#.UZTt4r9e7Hg

Harvey may not be on a par with Davy Crockett, but he is definitely a pioneer!

It has been almost two months since I last put finger to key, so I will attempt to bring you up to date on what has been happening.  You will recall that Harvey had a serious cellulitis infection that required daily intravenous infusions of antibiotics for a week.  It was clear that the infection had not completely cleared up, so the Dr. suggested another course of antibiotics.  Those of you who think that Harvey can’t act would have loved the performance he gave for the Dr. which included the trembling chin and quivering lip as he whined that he was tired of being stuck with a needle every day.  Talk about manipulation!  However, it worked, and the Dr. gave him a prescription for oral antibiotics to be taken over the following ten days.  Thankfully, the infection is gone.

April was a good month.  Harvey felt well and his appetite returned, so we decided to drive to Spokane, WA to visit his sister and his mother.  We enjoyed the trip very much although we are not sure whether his mother knew we were there or not.  She is 100 years old.  When we returned home, Harvey had a last appointment with Dr. Colbourn, who has now retired.  In fact, the entire practice was bought by Sutter and all of the Doctors are now Sutter employees.  This means, of course, that the infusion center has also been turned over to Sutter.  On April 30th at 10:00 AM we arrived at the infusion center and never got home until almost 4:00 PM.  It was utter chaos.  Gone were the homey quilts, and the bright and cheery staff.  Confusion reigned.  The nurse finally got Harvey’s premeds going and insisted that the Yervoy would be delivered by the pharmacy “soon.”  It was one and a half hours before they started the Yervoy.  They also decided on a new protocol which requires him to remain after the infusion for one hour so that they can take his vital signs and weigh him.  The study coordinator was very apologetic and assured us that things would run more smoothly next time.  Still, we are grateful that this treatment is being made available to him.

Up until last weekend, Harvey was feeling pretty good.  Then, on Sunday the 12th, I came home from church and he looked very pale and said he wasn’t feeling so good.  His appetite has disappeared and he is back to sleeping several hours in the afternoon.  Thank goodness we went to Meridians on Saturday for our Mother’s Day beef stroganoff.  It was delicious.  Now we are back to mushroom soup.  Ugh!

He continues to try to stay active.  We have moved some of the planted pots around on the back patio, and Harvey was busy rerouting the drip system when, all of a sudden, I heard a tremendous thump.  I looked out the back window and saw him lying flat on his back, his eyes closed, not moving, and I screamed “Oh my God!”  At that, he turned his face toward me, smiled, and lifted his left leg to reveal the outdoor lamp cord wrapped around his ankle.  After we ascertained that he had sustained no injury, I told him that I would probably die of fright long before he shuffles off this mortal coil.