karenulijohn

By this evening, it will have been three days since Harvey was admitted to the hospital suffering from Atrial Fibrillation.  Dr. Go, the cardiologist warned us that, with a compromising illness like cancer, Afib can be “pesky,” and that is turning out to be so.  Dr. Suhag was in this morning and assured Harvey that there are a lot of drugs available to treat this condition, and they just need to find the right combination.  At the moment, they are giving him Digoxin which may take up to 72 hours to work.  This is not what Harvey wanted to hear.

Dr. Singh is the hospital doctor responsible for Harvey’s treatment.  He is a lovely, young, Indian man with a caring and empathic bedside manner.  When first Dr. Singh came into the room, Harvey assaulted him with the most pressing question on his mind which was “When can I go home?”  Dr. Singh pulled the chair close to the side of the bed, reached over and took Harvey’s hand in both of his, leaned in and said softly, “We want you to got home well.”  He went on to remind him that they did not want to send him home before he was ready and then have to re-admit him.  Dr. Singh sat with him in this manner for a good five minutes or more.  Sadly, Dr. Singh informed us this afternoon that he will be working in a different location for the next few weeks, and that Harvey would have a new doctor looking after him tomorrow.  No one is even hinting about a discharge date at this time.  This morning, when I arrived, Harvey informed me that he was very grumpy, which translated means depressed.  He had hoped that all of his numbers would be normal, but unfortunately, that is not the case.  In addition, the drugs they are giving him add to his fatigue.  We continue to pray that his heart rate comes down and his blood pressure normalizes and stabilizes.

The Merry Melanomsters were devising a plan to come to the hospital last night en masse before heading to their favorite watering hole, The Infusion Taproom.  Fortunately, clearer heads prevailed, and they decided to telephone instead.  All of the melanomsters have served in the military, and somehow they each have a designated rank within the club.  Harvey is referred to as the CO, and while I know that normally means Commanding Officer, with these fellows, I am not so sure!  They might be better off to call him by his own given nickname of ROF (Recalcitrant Old Fart).

So many wonderful friends have visited him in the last few days.  Cards, emails, eCards, and Comments are prolific.  They really do make us smile and lift our spirits. We are grateful that we live in a community with such loving and caring people.  Difficult times like these really do reveal loving hearts.

What a day!  I came home from my workout yesterday morning, and Harvey had been out of bed a couple of times to brush his teeth and shave.  He was waiting for me so that he could shower.  I’m so glad that he did because, as I was enjoying my blueberry yogurt, I heard a loud crash in the bathroom.  I ran toward the noise and discovered that Harvey had fallen against the bathroom door.  He was conscious when I got there, but he said that he did not remember falling and hitting the deck.  He managed to  crawl back to the bed and was quite content to lay there and rest.  I took his blood pressure, pulse, and temperature, and only his pulse was a little high, registering at 116 bpm.  Within five minutes, I repeated the procedure, and his pulse had settled down to 68 bpm.  He decided to try again for a shower.  I braced myself in front of him as he stood up, and sure enough, he fainted again.  I managed to push him back onto the bed so that he did not fall to the floor.  I then forbade him to get out of bed for anything until I had spoken to the on-call doctor.  When I finally spoke to the doctor, he suggested I call 911 and get Harvey to the ER.  Harvey told me that he would go to the ER, but under no circumstances was I to call 911 because he did not want the ambulance, fire engine, hook and ladder, and forestry service to turn up at our front door.  I was not happy about getting him to the car and driving to Roseville, but we did it without incident.

Once we were checked in and triaged, we waited in the waiting room for approximately four hours.  When we finally got into the ER clinic, Dr. Ouligian arrived to take more details.  He then told us that Harvey’s heart rate was out of control, beating close to 170 bpm.  This is commonly known as Atrial Fibrillation.  He had experienced this once before when he was in the middle of treatment for Melanoma.  Lynda and Tara, both RN’s, started an IV with saline hydration and a drug called Diltiazem, to slow his heart rate.  The only tricky part with this drug is that it also lowers blood pressure.  Harvey was also seen by Dr. Najmabadi who, incidentally, took care of us when we first moved to Lincoln.  She was serving as the hospitalist for the day, and took no time in determining that Harvey would be admitted.  That was not what Harvey had wanted to hear.  He cried.  I cried.  But, we know that he is where he needs to be.

It wasn’t long before they had gotten him a room, and he was transported to room 185.  There we were met by Erin, his nurse and Vera, the nurse’s aide.  They got him settled and not long after that, Dr. Go, the on call cardiologist made an appearance.  Erin was surprised because it was well past 6:00pm at this point, and she told us that the doctors go home around 5:00pm.  Dr. Go is in the same practice with Dr. Y who treated Harvey three years ago.  At the outset, he told us that he has never heard of anyone dying from A-Fib.  That was a relief!  However, it can lead to stroke or congestive heart failure.  He said that A-Fib can be “pesky” for those with compromising health issues like cancer.  It can take some people four or five days before their heart rate and rhythm are within normal range.  That was another blow.  Harvey expected to be out of the hospital today.

I left the hospital around 7:00pm.  I hadn’t eaten anything since having my yogurt around 9:15am.  When I got home, I had some chicken salad and a couple of ice cream bars.  I felt like I deserved them.  Harvey called me around 9:00PM to say that he had some dinner and actually enjoyed it.  What does that say about my cooking which, when I offer to make something, he tells me he isn’t hungry and just can’t face food?

I guess the champagne toasts will have to wait for a few days!  Happy Anniversary, darling!

If it is true that white blood cells are manufactured while a person sleeps, then Harvey has been very industrious over the past week.  His white blood cell count went from 1.6K/ul to 8.8K/ul  in just one week after receiving the injection of Neulasta.  This result has not been realized without some discomfort.  His appetite has been non-existent, plus bone pain and overwhelming fatigue have kept him in bed for a majority of the day.  Any exertion resulted in a trip to the bedroom.   As of this writing, it has been one week since the injection and since his last chemotherapy infusion.  We are hoping that his appetite will improve as well as his energy levels with only five more radiation treatments remaining.

Daily trips to the hospital over the past eight weeks have become monotonous and tiresome.  Happily, members of the Merry Melanomsters have stepped up and offered to take Harvey on several days.  Not only does it give me a break, but it offers Harvey an opportunity to visit and converse with some of his drinking buddies.   It is interesting to note that I am at a loss as to what to do while he is gone.  Fortunately, I have some very good friends who have joined me for lunch or taken me shopping.  In fact, yesterday, a very good friend took me to Sam’s Club and then to Walmart for a wonderfully enjoyable morning.  We left at 8:00AM and returned around 11:00AM.  She enjoys baking and cooking far more than I do, and she was able to offer suggestions for food items with which to tempt Harvey, but that did not require superior skills in the kitchen.  I don’t even like to look at new cookbooks anymore because I seldom recognize all of the ingredients.  For example, I thought “pancetta” was a type of bread.  Imagine my surprise when I discovered it was nothing more than very expensive bacon fat.  (My apologies to those who understand the culinary qualities of pancetta).

Saturday, August 13th marks our 50th wedding anniversary.  It goes without saying that we will not be having a grand celebration at this time.  We may be able to have a glass of champagne and bar snacks on the Meridians Patio which would be more than enough.  However, we are planning a weekend at the Ritz Carlton in Half Moon Bay in September along with a Sunset Dinner with our daughter, son-in-law and grandchildren.  Given our situation, we are just grateful that we have had so many wonderful years together.  We can’t ask for more than that.

Harvey has officially graduated from Chemotherapy after his seventh and final treatment yesterday.  As an added bonus, the PICC line was also removed.  These milestones came on the heels of a very difficult week when Harvey experienced a lot of bone pain, overwhelming fatigue, and general weakness.  Despite the hydration scare of the previous week, and despite being told by doctors, nurses, technicians, and his wife that he needed to drink more water, he continued to under imbibe.  At one visit, the technician was unable to get a blood pressure reading because it was so low.  I finally reached the breaking point, becoming impatient with him over having to continually remind him to drink something.  After an expletive laden tirade on the subject, I ended my performance with a quick curtsy.  I don’t know where that came from, but it served to relieve the tension, and we had a good laugh.  Now, when I curtsy, Harvey knows I am not mad at him anymore.

Before the infusion yesterday, Dr. Suhag told Harvey that his white blood cell count was still very low, and that he was prescribing Neulastin.  Neulastin, similar to Neupogen, is a long lasting white blood cell booster that will work in his system for about two weeks.  This drug is likely to cause bone pain and fatigue.  Interestingly, the nurse who gave him the injection today told him to take a Claritin and a Tylenol to help minimize the pain.  We will see how that works.  Even though he is finished  with chemotherapy, Dr. Suhag is prescribing Neulastin prophylactically to boost his immunity, so that he does not succumb to an infection such as pneumonia or UTI.  He explained that a serious infection would necessitate a cessation of radiation therapy.  Starting radiation again would mean another round of chemotherapy.  Nobody wants that!

Late last week we met with Dr. Jones after Harvey’s radiation treatment.  Harvey asked him if he thought that the tumor had shrunk at all yet.  Dr. Jones explained that the radiation sterilizes the cancer cells and chemotherapy disrupts the cells’ ability to split.  The combination of two chemotherapy drugs works to damage cells at different stages of replication.  Over time, the cells can no longer reproduce and they die. The body disposes of the dead cells and the tumor shrinks.  This shrinking occurs weeks and even months after the treatment has ended.  So, we will have to wait to measure the success of the therapy.

We have weathered many storms in our lives together, and with God’s help and the good wishes and prayers of our friends and family, we will weather this storm as well.

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!

Yesterday was a very busy hospital day beginning with a follow-up appointment with Harvey’s melanoma surgeon, Dr. Jay Owen at 8:50 AM.  At 12:00 PM he met with Dr. Jones, the radiation oncologist.  After signing release papers and permission papers, and even a survey to assess his mental state, Harvey was escorted into the “radiation room” where he was “mapped.”  They began by doing a CT Scan of his chest area along with a barium swallow to pinpoint the precise area/s to be irradiated.  He was then tattooed with a small dot at several places including the middle of his  abdomen and one on each side along his  bottom rib.  As Dr. Jones explained, they are going to strike at the tumor from a variety of angles rather than one head on burst.  The entire process will take approximately 45 minutes each day including positioning on the table and adjusting the beam to the various points.  Harvey mentioned this morning that he was curious how these tattooed dots were deemed precise when his abdomen fat jiggles and slops over in different directions.  Well, he certainly hasn’t lost his sense of humor!  Treatments begin on Tuesday, July 12th at noon and will continue every weekday through August 23rd.

We had time before the next appointment to have a bite of lunch, so we went back to the cafeteria at the hospital.  I wouldn’t like to eat there every day, but the food is nourishing and filling, if not considered gourmet.  Next on the agenda was a quick visit with Dr. Suhag who showed us photos of his recent trip to Peru and Machu Pichu.  He confirmed that Harvey’s weekly blood levels were very good, and encouraged Harvey to keep hydrated and to keep his weight steady.  I think Dr. Suhag takes great interest in his patients and likes to keep in touch throughout the process.

We then proceeded down the hall to the infusion center.  As we entered the office suite, we encountered a good friend whose daughter is receiving treatment.  We cheerfully greeted each other and were assured that we would probably see each other again since each patient’s treatments are often scheduled for the same day of the week.  Once Harvey was in the chair and had received his pre-meds, he fell fast asleep for about an hour.  I tucked him in and headed for the mall, but I didn’t buy anything.  Remember, I spent all of his money last week.  So far, no side effects to report.  Thank goodness!

Harvey’s earliest appointment of the day with Dr. Owen was bittersweet.  When Dr. Owen came into the examination room, he told Harvey that this would be his last visit with him because he is retiring.  He and his wife have plans to travel and spend some time on the East Coast.  As he examined Harvey, he said that Harvey had made a remarkable recovery from the melanoma, and that he is strong and in good health, and feels certain that he will come through this trial in good shape.  He said that he knew Dr. Graves (the surgeon Harvey is seeing now) when they worked together at Memorial Sloan Kettering in New York City.  He assured Harvey that he could not be in better hands.  After explaining that the chemotherapy and radiation work synergistically to shrink the tumor, he said that there is a one in three chance that Harvey will not need surgery at all.  He went on to say that, while the surgery is involved, they have done it hundreds of times and the outcomes are very good.  The visit with Dr. Owen boosted Harvey’s morale immeasurably and when, at the end of the appointment, they shook hands, Harvey felt like he was saying goodbye to an old friend.  It is hard not to feel affection for someone who has taken such good care of you for five years.  Godspeed Dr. Owen!