karenulijohn

This past weekend was a complete washout.  Sunday was a repeat of Saturday only worse.  Harvey could barely get out of bed.  When he did get up, he was lightheaded and weak.  In fact, he spent most of the day supine on either the bed, the couch, or the recliner.  Conversation was kept to a minimum, and, at one time, I asked him if he would like me to just leave him alone, to which he answered “yes!”  It was a lonely day!

Monday promised more of the same, and I was worried enough to contact Dr. Suhag’s office.  His nurse, Mitzi called back immediately, and Harvey answered the phone.  All of a sudden, he was “perky,” oozing charm as he joked and laughed with her.  I broke in on this hilarity and told him to tell her what he had been experiencing for two days.  She listened intently and asked a few questions to determine if there was any infection, and then asked if Harvey was drinking enough water.  He said he was, at the same time I shouted that he was not.  His idea of drinking a ten ounce glass of water is taking a few sips out of a ten ounce glass!  Mitzi has clearly dealt with this kind of intransigent before because she used the ultimate threat: a two hour hydration session at the infusion center.

I brought him a 16 ounce bottle of water and demanded he drink all of it.  Tough love!  He put on his whiney, pathetic voice, telling me that it made him feel bloated, but he did drink it.  Less than half an hour later, Mitzi called back to inquire if there was any change.  There was a significant change.  He was more engaged and was able to walk to the kitchen and back without having to lie down.  We have agreed that he will drink two 16 ounce bottles of water and a 32 ounce bottle of Gatorade every day.  He still feels tired and less energetic than usual, but at least he is able to function.

Harvey had the penultimate chemotherapy treatment this afternoon after seeing Dr. Suhag and having a radiation treatment.  Dr. Suhag has  prescribed three more Neupogen injections over the next three days because Harvey’s white blood cell count is very low.  Even though he has only one more chemo session, Dr. Suhag did not want to take a chance on having to postpone it.  We don’t want that either.

With the heat that we are experiencing this week, we all need to be diligent about getting enough water.  The amount of body water decreases by approximately 15% (about 6 L) between the ages of 20 and 80.5 With this decrease, the body becomes more susceptible to dehydration from the loss of a small amount of body water.  Signs of dehydration include confusion, difficulty walking, dizziness, headache, severe fatigue, dry mouth, sunken eyes, inability to sweat, rapid heart rate, and low blood pressure to name a few.  So, have a big glass of water and remember the importance of being hydrated.

During the night, while I was lying awake, I kept thinking about our planned visit in San Mateo beginning today.  I worried about Harvey’s low white blood count and the admonition from the nurses to be careful being around too many people who might have colds or flu because Harvey is very susceptible to illness.  I remembered that our granddaughter, Claire is a counselor at a Galileo Day Camp, working with four year olds.  These little ankle biters can often carry very virulent germs, and I was afraid Claire could transmit something unknowingly.  Add to that, staying overnight in a hotel room, particularly after watching the Rossen Report revealing what a well known bacteria expert found when investigating five large hotel chains, was taking a big chance.  It wasn’t pretty!

I needn’t have worried because this morning, Harvey manifested the exact same symptoms that he had last Sunday.  We were a little puzzled because we had attributed them to the Neupogen injections.  In fact, when we referred to the Cancer Treatment Manual, the number three most common side effect of Taxol is weakness and flu like symptoms along with extreme fatigue, the onset of which occurs some three to four days after the infusion.  Bingo!  After checking with the on call doctor, Harvey took a couple of Tylenol which relieved the aching in his joints.  He was able to eat a little bit, which actually made him feel better too, but he really does not have much of an appetite.  I am hoping to tempt him a little later with a big slice of Lemon Cake and ice cream.

Kudos to the Hilton Garden Inn in San Mateo for forgiving the late cancellation fee.  I explained our situation in an email to the Front Desk Manager, and a very nice young lady, Rachel, called me to let me know that the charge had been reversed.  I had explained that we always stayed with them when we visited our grandchildren, and I hoped that they would be able to give us some relief.  A big “Thank You” to Mr. Gutierrez.

It goes without saying, really, that we were heartbroken at not being able to see our “kids,” but we know we did the right thing to cancel.  Dawn said that she would work out a way to come to Lincoln to visit with us a few times until Harvey’s treatment is completed, and he is feeling better.  We are hoping for a better day tomorrow.

“How are you feeling?” is a question I seem to be asking of Harvey ad nauseam, and the response I get gives me little or no satisfaction or information.  Fortunately, Harvey has been feeling surprisingly well considering what he is enduring.  Because his white blood cell count was too low, three injections of Neupogen were prescribed and given over three days last week beginning on Wednesday.  On Friday, he seemed to lack his usual energy, and by Saturday he was “off his food.”  As I was getting ready to go to church on Sunday morning, he stumbled out of bed and immediately stumbled back in saying that he felt different.  “How different?” I asked.  “I don’t know, just different.”  With that kind of response, it is very difficult to assess if this is an emergency situation or just a minor side effect.  He spent most of the day in bed feeling weak and listless and ate very little.  Miracle of miracles, he awoke on Monday feeling like his old self, energetic (well as energetic as he gets) and hungry!  It was at this point that he told me that the aching in his chest and bones was gone, and he no longer felt like he was getting the flu.  These are classic, minor side effects of Neupogen.  If only I had known at the time.

Very early in our marriage, I learned that Harvey does not like to talk about or share information about illness or infirmity.  I attribute some of this reluctance to the fact that his father spent some years in a sanitorium for Tuberculosis, and because Harvey was so young, he was not allowed to visit or see his father except through a window.  Over our years together, he has seldom been ill apart from occasional cold or flu until his bout with melanoma.  Of course, he may have been seriously ill at some point, but I was not informed of the symptoms, so how would I know?

On Tuesday, he completed his fifth chemotherapy infusion and began his second week of radiation.  His hair appears to be thinning, but it’s not really that easy to tell, and apart from the flushing, he is wonderfully free of side effects, I think!  We were on the phone with our daughter this morning, and during the conversation we noticed that his voice seems to be a little raspy.  He mentioned it to the technician at his daily radiation treatment, and the technician commented “you’re right on schedule!”  We saw Dr. Jones, the radiology oncologist on Wednesday, and he said that Harvey had another couple of weeks “reprieve” before he would have some discomfort eating and swallowing.  So, in view of how well he feels, we are going to visit our daughter and her family in San Mateo this weekend.  We don’t plan anything too far ahead, but we are both so looking forward to this visit.

Believe it or not, Harvey has had four chemotherapy treatments with only three more to go, and still no adverse effects!   Tuesday morning began with a phone call from Dr. Suhag’s nurse Mitzi telling us that while Harvey would still be receiving his treatment that day, he would have to begin a series of three injections of Neupogen because his white blood cell count was very low.  Of course, we had no idea what Neupogen was or would do, so I did a little research.  We discovered that it is a drug that stimulates the growth of white blood cells in the bone marrow, but it also has some significant side effects, so we thought.  Later in the morning, we had a chance to ask Dr. Suhag about this drug and its possible downside.  He turned slowly, looked down over his glasses at me and said, “Dr. Google I presume?”  I was rumbled!  He then brought out his iPhone and looked up a cartoon he said he keeps just for patients like us.  It depicted a Minion with the caption, “I went from a mild headache to being clinically dead in three clicks!”  He went on to elaborate that most patients on chemotherapy have low blood counts at some point, and this drug is given all of the time with few if any difficulties.  The worst Harvey could expect was some aching in his hips and back.  The worst part is actually turning out to be the extra trip to Roseville for the injection.  On Wednesday, his injection appointment was at 9:00 AM and his radiation appointment was at 12:00 PM.  On Friday, radiation at 12:30 PM and injection at 5:00 PM.

Dr. Suhag also mentioned that he had presented Harvey’s case to the Tumor Board at the hospital. This group, which includes surgeons, oncologists, radiologists, and interested parties,  meets every Wednesday to review various cases and discuss test results and treatment protocols.  He said Harvey’s case was interesting because of his previous bout with Melanoma and the Yervoy study in which he participated.  All in attendance agreed that Harvey’s plan of treatment is the right one.

As we were winding up our appointment, Dr. Suhag asked what was next for us.  Of course, Harvey was going on to Radiation Oncology, and I mentioned that I was having an X Ray of my left foot.  He swung around and asked what was wrong with my foot.  I told him about the painful bump on the sole right below the ball.  “Let me look at it,” he said.  I couldn’t believe it.  He actually examined my foot and said that the bump was probably Morton’s Neuroma, which is a swollen or thickened nerve.  He suggested I wear orthotics, and get a soft pad to cushion that area of my foot.  We love Dr. Suhag!

I have waited a few days since Harvey’s third chemotherapy infusion to see if anything new develops.  I am happy to say that, at this writing, he is not experiencing any side effects with the exception of some mild flushing the day after the treatment.  He is continuing to keep his weight up and is able to eat fairly normally, although what he eats has to appeal to him.  Food that appeals to him one day may not be so appealing the next day, and he will have trouble getting it to stay down.  We have continued to live our lives as normally as possible, participating in the Lincoln Hometown 4th of July Parade, BBQ with friends, brunch with the church fellowship, etc.  He begins daily radiation on Tuesday along with his weekly chemotherapy session.  I pray that he continues to be free of side effects.

I have been asked on several occasions how I am doing.  I think the best way to describe that would be to ask you to imagine that Harvey and I are passengers on a flight to some exotic island for a much-deserved vacation.  We are midway through the flight at cruising altitude, and Harvey is sleeping, loudly, in the seat by the window.  I am working on a crossword puzzle when the “Fasten Seat Belt” sign is illuminated.  Shortly thereafter,  there is a voice from the cockpit, “Ah, folks, this is the Captain speaking.  We are getting reports of some “chop” up ahead.  So, for your own safety, we have turned on the seat belt sign and ask you to return to your seats…”  I am instantly on alert.  I check Harvey’s seat belt (because he is still sleeping), cinch my own up tight, put up my tray table, put away my crossword puzzle book, and grasp the arm rests tightly.  My mind is racing, full of questions such as “when will the bumpiness start; five minutes, ten minutes, half an hour?  How long will it last?  Will it last for the rest of the flight or just a few minutes?  Will it be severe chop?  Mild chop?  Mildly severe chop?”  I nudge Harvey to let him know I’m frightened, and he sleepily pats my hand and mumbles something like “It will be all right, Sweetie!”  I look at him indignantly and say “That’s it?  That’s all you’ve got?”  This analogy turns much darker when I am lying awake in the middle of the night.  The turbulence becomes so severe that it rips the wings off of the plane and we crash and burn!  So, the direct answer to the question “How am I doing?” is, I am permanently braced for severe chop!