karenulijohn

Yesterday, Harvey had a follow-up appointment with Dr. Suhag.  When asked how he was feeling, Harvey replied that he supposed he was getting better but the progress was so slow, it was seemingly non-existent.  He went on to say that he was somewhat depressed by the fact that each morning he expected to feel significantly better, but in actuality, could detect no change.  Dr. Suhag was sympathetic, saying that Harvey has been through a lot, particularly in the last several weeks, and, taking into consideration his age, he was really progressing quite well.  He pointed out that the diarrhea was somewhat controlled, there was some weight gain, and no fevers detected.  He also reviewed Harvey’s recent blood tests, saying that all the levels were in normal range, except his proteins.  We would need to work on his nutrition.  Realizing that Harvey was still looking pretty glum, Dr. Suhag likened Yervoy to a Mack Truck hitting him.  The truck was now gone, but Harvey was still left with many broken bones and internal injuries.  It will take time for everything to heal, perhaps four to five weeks.  I had to smile when Harvey reiterated this to the study coordinator and said it would be two to three weeks.  I guess you really do hear what you want to hear.

Before we left the Doctor’s office, Harvey had another blood draw for the study.  I was somewhat concerned since they gave him a blood transfusion less than a week ago, and already he has had two fairly substantial blood draws.  He was a little unsteady after the one yesterday, so we came home right away, and he was asleep on the bed in moments.

I have suggested that Harvey needs to get out of himself a bit and try to be engaged in something he really enjoys.  To that he replied that he enjoys sleeping!  He takes the point though and is going to go to a Rotary Board meeting this afternoon.  We are also planning a short driving trip to Inverness and Santa Rosa, with a stay at the Sheraton Sonoma County in Petaluma which is surrounded by a wonderful marina.  More doctor appointments await us upon our return, but maybe a few days away will give us both a boost.

As I predicted, Wednesday was a very happy day on so many levels.  By the time I arrived at the hospital, I had missed both Dr. Suhag’s  and the hospital doctor’s visits. Fortunately, Harvey was able to relay, to my satisfaction, most of the information that he had heard.  The best news, of course, was that his blood levels were now in normal range, and he would be discharged.  However, they were still a little concerned about his anemia, so they  scheduled him for a blood transfusion before his discharge.  After cross matching his blood, they said it would take a little while to get the blood from Sacramento.  We decided that hospital time is counted in hourly increments.  It wasn’t until about 3:00PM that they began the transfusion.  The only home treatment is to take two Immodium an hour before each meal.  That way, he will be able to benefit from the nourishment he is consuming.   It will take several weeks for Harvey to recover and return to his “normal” self.  I can wait, as long as he is going in the right direction.

Our daughter and granddaughter arrived at around 12:30PM with love and kisses all round.  Harvey’s face really did light up when they walked into the room.  We visited for an hour or so, and Harvey began looking longingly at the bed.  So, we tucked him in and went out to have a bite of lunch.  I was pretty confident that he would sleep most of the time we were gone. We had a lovely lunch together, catching up on what has been going on in their lives.  I especially enjoyed hearing about Claire’s (granddaughter) plans for her sixteenth birthday on Thursday.  She is so lovely and such a pleasure to be with.  Of course, I don’t have to tell anyone how I feel about Dawn.  I’m just crazy about her and everything she does (pretty much!).  I am friends with a wonderful group of ladies here in Lincoln who were having an afternoon get together, and I so wanted Dawn and Claire to meet these wonderful ladies.  They welcomed us with hugs and laughter, and we enjoyed an hour of delicious food and story telling.

When we arrived back at the hospital, Harvey was about a third of the way through the blood transfusion.  We visited and laughed and teased as usual and when it came time for him to be unhooked from all of his tubes and wires, he became a little impatient.  I reminded him that they could decide to keep him, just for spite, and he calmed down.  He did not want to stay another minute longer than necessary.  We said goodbye to the girls in the parking lot and they headed home to San Mateo.  What a wonderful day!

Since coming home, Harvey has improved tremendously.  I have tried to follow the example of the hospital with mealtimes and just let him eat what he wants of anything.  He managed to eat about three ounces of salmon, some yellow squash, and a pear half.  He had a very good night, and in the morning he had a scrambled egg and a pear half.  Those pears seem to go down well.  Last night he enjoyed Teriyaki vegetable rice, a “Karen Special.”  This morning he went for a blood test at Twelve Bridges and has an appointment with Dr. Suhag on Monday.  I’m so pleased that they are looking after him, making sure that he is making good progress.  He just came in the door, looking a little harried.  It turns out that Twelve Bridges would not do the blood test because he did not have the proper coding number.  He ended up going down to the hospital.

To everyone who follows this blog and has sent good wishes, love, and prayers, thank you from the bottom of our hearts.  It has meant so much to both of us.  We love you!!

So many things have happened in the last four days since my last post, I hardly know where to begin.  I focused mostly on the colitis, but Harvey had been experiencing profound exhaustion, lack of energy, complete loss of appetite, considerable weight loss, and depression.  He spent most of his time laying on the bed, and slept about 18 to 20 hours per day.  He displayed no desire to get up , even if he could.  I was becoming very anxious about what was happening to him.  On Friday afternoon, we went for a ride in the car and upon our return, Harvey did not seem to be aware of his surroundings.  When he finally exited the car, he said he needed to close the garage door, which, by the way, was already closed.  When he finally made his way into the bedroom, he felt very hot.  He had a fever of 102 degrees F.  Naturally, I called the on-call Doctor and reported this, mainly because we were again heading into a weekend.  Dr. Gowda returned my call and we determined that the Lomotil was probably responsible for Harvey’s confusion, so we discontinued it.  On Sunday, he was still running a low grade fever although the confusion had subsided, but his speech was very slow and somewhat slurred.  We decided that when I called Dr. Suhag’s office on Monday, we were either going to go to the ER or get the Dr. to agree to admit him to the hospital.  We waited dutifully for return calls which never came, until finally, we just drove to the ER.  He was taken to a room immediately when they saw that his blood pressure was 70/50 with a very irregular pulse.  We spent most of the afternoon there while blood tests, chest Xray, and ECG were ordered.  Around 4:30PM, the ER Doctor came in, and we told him that we have done everything that we’ve been told to do in order to get him back on his feet, but our efforts were going unrewarded, and we felt it was time that the professionals intervened, namely the Doctors.  While he was unable to admit Harvey himself, he said he would make a good case for it to the “hospitalist.”  The hospitalist turned out to be an internist connected to the hospital who coordinates admissions for ER patients.  He was very kind, asked a lot of the same questions, and came to the conclusion we wanted.  Harvey was “in.”  It took another hour or so to get him to a room, but he was transported at about 5:30PM.

While we were waiting to go to the room, Dr. Suhag came to see Harvey.  He was very calm and kind, listening to all of our concerns.  Finally, he came around to where I was standing and put his arm around me and said, “this is not serious.  You mustn’t worry about this.  It’s going to be all right once we get his potassium, sodium, and red blood count up to proper levels.  He’s going to be fine.”  When I told our daughter what the Doctor had said, she commented that he was quick to pick up on my MO.  It did make me feel better, and I was grateful.  Harvey was given a very nice single occupant room on the first floor near the gift shop.  A nurse and a nurse’s aid introduced themselves and gave us a quick tour of the room and its amenities.  Almost immediately, they began to give him more fluids intravenously, and would continue giving him up to six bags of Potassium throughout the night.

When I arrived this morning, he was sitting up in a chair facing a delicious looking breakfast of fresh orange slices, scrambled eggs, sausage, country potatoes, oatmeal, and coffee.  He managed to eat most of the eggs and all of the orange slices.  That is actually the most solid food he has had in two weeks. The hospital doctor came and said Harvey would be there another night or until all of the tests had been completed and his blood levels have been normalized.  I left him for a couple of hours while he slept, and when I returned he was sitting, looking at a lunch of sliced turkey, gravy, mashed potatoes, mixed vegetables and fruit.  He loved the potatoes and gravy, ate all of the fruit, but gagged over the turkey.  We took a walk down the hall, dragging his intravenous “buddy”.  I was surprised at how he seemed to be so willing to try to be active and to actually eat. It turns out that the nurses told him that if he didn’t get moving, he wouldn’t get to go home.  In fact, they had been trying to get a urine sample all morning with no luck.  Finally, around 1:00PM the nurse came in and said that if he wasn’t able to provide it, they would have to use a catheter.  Miraculously, within 20 minutes, a sample was produced.  That nurse simply provided a most effective incentive.

I had a lovely phone call from Harvey at about 6:00PM this evening.  He thanked me for coming to the hospital today, and for sticking with him through all of these trials.  He missed me and was looking forward to my visit tomorrow.  Our daughter and granddaughter are coming up from San Mateo to visit with us as well.  It will be a happy day, made that much more joyous because the Harvey I know and love is coming back.

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.

As of last night, Harvey has had five infusions of antibiotics and there is a marked improvement in his condition.  Apart from the fact that his foot hurts like the dickens, he is much like his old self, able to do a few things around the house, but most especially, able to come out with the jokes and comments that so endear him to me.  Thank goodness his appetite is also slowly returning.  I don’t think I could stand another night of Campbell’s Cream of Mushroom soup for dinner.  The fuss he made over my fixing it might have fooled the average person into thinking that I had prepared Pheasant Under Glass.  I guess when you don’t feel good, some bland foods taste positively delicious.

It seems like we have spent most of our days, since Thursday, at Sutter hospital, either visiting the doctor, or having an infusion, or blood draw.  Yesterday we went to see Dr. Colbourn in the morning.  He had a look at the toe and asked Harvey if he thought the red area had receded.  Harvey replied, “Oh yes, quite a bit!”  I jumped in and said that it looked exactly like it did last Thursday except the redness was not so angry looking.  So, the doctor took his pen and drew a line around the offending red lump providing a baseline for comparison.  He then told us that it did not need to be lanced because there was no sign of any blood or puss.  He went on to describe the lancing procedure in great detail, and I could feel Harvey squirming in the chair next to me.  Dr. Colbourn laughingly told us that he loves to describe things like that in gory detail because patients feel better when he tells them that the described procedure won’t be required.  We will be seeing him again tomorrow to determine whether or not Harvey will continue receiving antibiotics by infusion or in pill form.  While we hope for pill form, we will do whatever is necessary to get this infection under control and finally healed.  After a quiet afternoon, we headed back to the hospital at 5:00PM for the infusion.  Days go quickly with this schedule.

This morning we saw Harvey’s surgeon, Dr. Owens.  He noticed immediately that Harvey has lost weight, asking what was happening.  I was satisfied that Harvey’s description of events provided enough detail, so I kept quiet.  Dr. Owens examined his face, cheeks and neck, first with his fingers and then with the ultrasound.  He is very thorough, even explaining to me what he was seeing.  Finally, he announced that everything looked terrific and we can look forward to seeing him again in three months.  Oh, what a relief!

We decided to celebrate at the Black Bear Diner in Roseville where Harvey tucked into two eggs over easy, all of the strip potatoes and one sausage patty.  He couldn’t quite manage the second sausage patty and the biscuit, but I was so happy to see him eating and enjoying the experience.  It’s great to have him back!

It has been approximately six weeks since the last infusion, and Harvey has experienced debilitating side effects throughout this period.  No single thing has been catastrophic, but in combination, they have made a significant impact on our lives.  He has complained of a general feeling of being unwell, and has experienced some gastric issues which finally resolved after being told he could take Immodium.  His appetite diminished to the point where his total caloric intake for the day might be no more than 500 calories.  Wonder of wonders, he has even “gone off” White Zin!”  Needless to say, he has lost a total of 18 pounds over this time period.

All of this has not only affected Harvey physically, but emotionally as well.  He is not accustomed to being bedridden, and unable to stand for any length of time without feeling as though he would fall over.  This all came to a head this past Tuesday when he told me to have a look at his big toe.  It was very swollen and red, hot to the touch.  He was having difficulty walking on it.  He finally called the “on call” doctor with the Yervoy study.  She returned his call immediately and suggested that he try to move his appointment with Dr. Colbourn forward from next Monday.  Luckily, we were able to see him yesterday at 4:00PM.  Earlier yesterday, Harvey had planned to attend his weekly Rotary meeting, and I was going to walk over and meet him there.  As I was preparing to leave, he called to me from the shower saying that he didn’t think he could go, and that he felt so weak he could barely make it to the bed.  I felt his pulse, but it wasn’t racing, though he did seem to have a fever.  He slept the entire day until I roused him at 3:00PM to get ready for the appointment.

Dr. Colbourn listened to this litany of complaints that we had attributed to Yervoy, and after looking at Harvey’s toe, announced that he had an infection called cellulitis.  “Cellulitis (sel-u-LI-tis) is a common, potentially serious bacterial skin infection. Cellulitis appears as a swollen, red area of skin that feels hot and tender, and it may spread rapidly.  Left untreated, the spreading infection may rapidly turn life-threatening. That’s why it’s important to seek immediate medical attention if cellulitis symptoms occur.” (http://www.mayoclinic.com/health/cellulitis/DS00450)

Harvey will be receiving intravenous infusions of the antibiotic Ceftriaxone Sodium, which is a cephalosporin antibiotic, for the next seven days.  He had his first infusion at 6:00PM yesterday after leaving the Dr.’s office.  We finally got home last night at about 8:30PM and he went straight to sleep.  This morning he awoke at 8:00AM with the most cheerful “good morning” that I’ve heard in weeks.  He ate a banana, had some orange juice and a piece of toast with butter and jam.  What a difference!   The doctor is very optimistic that Harvey will be feeling much more like his old self in a matter of days.  We will see him again on Monday morning to check on Harvey’s progress.  Praise God and thanks to all of you who have kept Harvey close in your thoughts and prayers.  We are truly blessed!