karenulijohn

Thankfully, I don’t have much to report in the way of drug reactions or doctor visits.  Harvey continues to be actively involved in all of the clubs and associations to which he belongs.  I mentioned in an earlier post that he is organizing “Hamfest” for the Ham radio club.  This event happens tomorrow morning, and I have been impressed into service manning the coffee and donut booth at 6:00 AM.  By his own admission, he will be glad when this event is finished.  Like most of us, he worries whether it will be a success or not.  Only time will tell.  I suspect the donut sales might be enhanced if I wore something provocative.  On second thought, no.  It might go the other way.

Harvey reads the paper religiously, every morning.  Lately, he has become more and more agitated over the state of the State.  Sometimes, he is moved to put pen to paper (or fingers to keys), and writes a very direct, but humorous letter and sends it to the local newspaper or radio station.  In England, several of his letters were read over the BBC’s Terry Wogan morning talk show.  He wrote another letter to Lee Iacocca, president of Chrysler Corp., which resulted in a phone call from the engineering department in Detroit.  I have reproduced his latest letter below.

Harvey’s Homily:

Some years ago, when we decided to return to the USA and live in California, many friends suggested we choose the southern part of the state due to the entertainment facilities, most particularly Disneyland. We have since discovered that greater Sacramento offers just as much entertainment, and certain leaders even bear some remarkable similarities to favorite Anaheim-based characters.

In addition to the infusion on Monday, Harvey had two other doctor appointments scheduled.  The first was to visit Harvey’s wonderful surgeon, Dr. Owens. It was quite early on Wednesday morning when we arrived at the office.  Dr. Owen took one look at his handiwork and pronounced it “sweeeet!”  He then proceeded to examine Harvey’s neck and cheeks,  looking for possible swelling.  He has a portable ultrasound machine which he brought in and thoroughly examined the same areas, measuring one or two lymph nodes.  He seemed satisfied with what he saw and told us that he is the “follow-up” guy.  Every three months, Dr. Owens will examine Harvey and discuss his treatment.  On Friday morning, Harvey had his final appointment with the radiologist, Dr. Jones.  I sent him off on his own with the admonition that he must remember to tell me everything.  It turns out there was not much to tell other than Dr. Jones was very satisfied with Harvey’s progress and that he would not need to see Harvey again.

In the meantime, I decided that I must not neglect my health, so I had Harvey drop me off at the blood lab near my doctor’s office before he headed to his appointment with Dr. Jones.  There were five people ahead of me having blood draws, so I was there for quite some time.  Of course, I had been fasting, so when I finally left the lab, I walked to Starbucks and had a hot chocolate and a croissant.  I then carried on with my usual walk, and was heading up the driveway when I felt a little twinge in the vein in my arm where the needle had been inserted.  I pressed the bandage with my finger, and lo and behold, the garage door went up.  I was startled and surprised, and when I looked around, Harvey was driving down the road toward the house.  Of course, he had pressed the garage door clicker, but he said the look that crossed my face when the door went up was priceless.

I was prepared to say that Harvey has had no reaction so far to the Yervoy, but this evening he said he was feeling very tired and wasn’t hungry at all.  I went over to feel his head and it was clear that he had a fever.  After taking his temperature, the thermometer registered 101 degrees.  According to the instructions given to us on Monday, he was to call and report a fever and loss of appetite.  He called the number given and the person on the other end of the line kept asking him why he was calling this number, and insisted she knew nothing about the Yervoy study.  She finally agreed to contact the Dr. on call and said that someone would return Harvey’s call.  About 20 minutes later, the phone rang and the doctor identified himself and said “take two tylenol.”  He was a man of very few words.  I am happy to report that two hours later, the fever is gone and Harvey is having a wonderfully nutritious meal of saltines and peanut butter. All is well.

When I got up yesterday morning, I prepared a bag, much like the one I might take on a transcontinental flight.  It contained water, snacks, books, puzzles, cribbage board, a deck of cards, and a few other miscellaneous items, just in case we needed something to occupy our time at the infusion center for three to four hours.  At 9:45 AM we were escorted into a large room lined with a variety of recliners and lounge chairs.  Bright, colorful quilts hung on the walls and sunlight streamed through the wall of windows.  The nurses stations were piled high with magazines, chocolate, red licorice, and hard candy.  We were greeted by Kathy who would serve as Harvey’s nurse for the day.  She had him choose a chair and I was invited to take the one next to him.  Kathy began by giving him a small pamphlet that he is to carry with him, describing the drug and its effects, for emergency purposes.  She also encouraged him to keep a journal each day of how he was feeling and what changes he might be experiencing.  Kirsten, the study coordinator, then arrived with a bag of vials for the blood letting.  The study required 16 vials and the doctor needed five, for a  total of 21.  It actually sounds like a lot, but is, in fact, less than a pint.  He was then given a couple of Tylenol and a Benadryl drip.  We were told that these were given to help prevent infection and any pain from the infusion itself.  It took about 20 minutes and though Harvey kept insisting he didn’t feel any different, I could tell that it was having an effect because his speech had slowed down considerably.  Then, Kathy brought in the bag of Ipilimumab which is the generic name of the drug.  The brand name is YERVOY.  For more information on this drug, visit http://www.YERVOY.com.  It would  take 90 minutes for the Yervoy infusion, and I could tell that he was becoming drowsy.  So I tucked a beautiful blue multi colored quilt around him, gave him a kiss, and left him to snooze.  I returned about an hour later, and he was sitting up, reading.  When the infusion was finally finished, they sent him on his way with a cheerful wave.  The next infusion is September 18th.

As we were leaving the building, we were both struck by how “normal” everything seemed.  We aren’t special, experiencing something that no one else has.  There are thousands of people going through the same thing, day after day.  Some, like Harvey look perfectly healthy and normal.  There were several people in the infusion center while we were there.  A young woman, no more than 25, a couple of older gentleman, a couple of women in their 40’s or 50’s.  The nurses treated them all with such kindness and encouragement, always maintaining a cheerful yet efficient and professional demeanor.

At this point, it was about 12:30 PM and we were starving.  We decided on Bucca di Beppo where Harvey tucked into a large plate of spaghetti with a giant meatball and a gallon of marinara sauce which he finished off with half a loaf of Italian bread.  He said he was “carbo-loading.”  Huh!  After all those carbs and his ordeal, he slept most of the afternoon.  This morning he woke up feeling a bit flushed in the face, but otherwise, nothing is different.  He promised to tell me if anything changed so that I don’t need to keep asking him.  Isn’t that nice?

As a lifetime worrier, the title of this post has become my new mantra.  Harvey’s brush with melanoma and the ensuing surgeries, tests, and treatments, have illustrated how little effect worrying really has.  Despite the many times I have tried to overcome my worries, I have never really been able to conquer them, until now.  Sort of.

Harvey has decided that several things need to be done to the house, and he needs to get them done in case the medication “lays him low.”  So, this morning he decided to paint the trim on the front of the house including the shutters and the overhang.  I wasn’t worried until he needed to get the tall ladder out so that he could reach above the garage door.  I calmly asked if he would like me to stand at the bottom of the ladder and hold his leg.  “Why would you do that?” he asked.  “Well, in case you fall,” I replied.  He pointed out that if a 200 lb man falls from the height of a ladder onto a 130 lb woman, it is likely that both would be injured, and the woman might possibly be “flattened.”  I could not argue with the truth of his logic, so I giggled and wandered off down the driveway.  As I began to walk to the left toward Overland, where the homes back onto the golf course, I wondered if perhaps I should not go that way because I might get hit on the head with a stray golf ball.  Of course, if I started off to the right onto Stag’s Leap, I could be hit by a car swerving round the corner.

Hold on!  Take a deep breath.  “Worrying doesn’t change the outcome”…

Our prayers have been answered today.  The oncology hematologist told us that all of the recent scans and tests were negative for any cancer.  He confirmed that the MRI showed a brain.  I guess that is “doctor humor.”  Seriously, he said there were no definitive signs of any cancer.  After a brief, routine physical, he signed the paperwork confirming that Harvey is eligible for the study.  A few minutes later, the study coordinator, Kirsten came to discuss the next steps.  His treatment will begin on Monday, but we don’t have a time as yet.  She left us to put Harvey’s name into the “randomization process” for the study.  Well, we won the lottery there as well.  Harvey has been selected for the low dose, Ipilimumab treatment regime.  Initially, he will be given an intravenous infusion once every 21 days for a total of four doses.  After that, the maintenance regimen will consist of an infusion every twelve weeks, beginning at week 24, for a maximum of four doses.  Fifty percent of participants have some side effects, but the percentage of serious side effects is quite low.  The most common side effects include inflammatory bowel, skin rashes, and hormone problems.

Monday will undoubtedly be a long day.  We have been told to plan to be at the infusion center for four to five hours.  The first infusion comes with a hydration treatment and a significant blood-letting.  I believe they will take approximately 6 – 8 vials of blood.  Kristen told Harvey to begin drinking (water) in large quantities at least two days before the treatment.  He is to bring snacks and drinks (water), books, and magazines in order to pass the time.  However, they will give him a sedative, and knowing him, he will probably sleep through most of it.  I guess I’ll just have to go to the mall while he naps.

This is the outcome we have both been praying for, and we are grateful for all of the good wishes, thoughts and prayers from our friends and family.  Thank you all for your support and love.  It means so much to us.

I have always maintained that Harvey only listens with half an ear and then, only to half of what is being said.  That means that he actually only processes and acts upon one-eighth of the information.  A perfect example presented itself at the MRI office.  Upon our arrival, he was told to take everything off from the waist up, remove all metal objects from his pockets, and put on the ubiquitous green gown.  As he disappeared into the changing room, I went down the hall to a small grouping of chairs and waited for him.  Moments later, he came striding down the hall in his bare feet, and by the drape of the gown, I knew that he had removed all of his clothes, except for his “skivvies.”  In a gentle voice, I asked him why he had taken all of his clothes off.  He said the nurse had told him to take everything off.  I pointed out that she had told him “everything from the waist up.”  At that moment, the nurse poked her head out into the hall to call him into the treatment room, and he asked her to repeat her instructions.  Of course, she said “everything from the waist up.”  He shrugged his shoulders, loped up the hall, and back into the changing room.  When he returned, he was carrying his shirt, shoes, and socks, book, glasses, et al, and deposited everything into my lap.  I could only assume that this was my punishment for being rrrrrright!

On Tuesday, we went by his bank to withdraw some funds, and the ATM would not accept his debit card.  After several tries, he went into the bank.  The teller made a few more attempts, deemed it unusable and issued him a replacement card.  He then tried to use one of his credit cards at the gas station with the same result.  You have probably guessed by now what had happened.  It turns out that his wallet, which contained his ATM and credit cards, was in his hip pocket during the MRI and the magnetic strip on the back of each was corrupted.  In fairness to Harvey, no one had mentioned that the magnetic resonance might negatively affect his credit cards.  When we got home, he contacted the credit card companies and they have issued replacements. I never thought of using an MRI machine to disable credit cards in order to limit spending.  That seems a bit extreme!

In the whole scheme of things, a few phone calls is not too high a price to pay. We are so lucky to be living in an area where access to the most cutting edge diagnostic test equipment is so readily available.  We continue to enjoy our lives together, including each other’s foibles.  Life is good!

All of the tests that are required in order for Harvey to apply for the study have been completed.  Beginning early Friday morning, having fasted since the previous evening, he went in for a CT scan of his “coconut,” as the technician quipped.  The nurse accessed Harvey’s new Power Port for the first time to inject a dye for contrast on the image.  The scan itself took approximately 20 minutes.  They left the access to the port in place and we drove to the imaging center on Douglas Blvd. for the PET scan.  We knew the drill because he had this scan done before the second surgery.  After the radioactive material was injected, he had to lie still for one hour before the actual scan could begin.  He was not permitted to read, and I was not allowed to remain in the room.  I think he was asleep before I even left the room, and I went to the mall.  I returned about one and half hours later, picked him up, and we went to our favorite Habit Burger.  We were both starving.  This morning, after fasting overnight, Harvey went to have his blood drawn at about 7:30AM.  At 9:30AM we checked in at the RAS center in Roseville for an MRI of his brain.  Again, they accessed the port so that a contrast dye could be injected.  As before,  he was treated very well by kind and sensitive nurses and technicians.  We have no complaints.

We did learn a little more about the Power Port.  A specially qualified nurse cleans the area carefully, feels for the identifying markers on the surface of the skin, and then, using what looks like a bottle cap with a one inch needle attached, sticks it directly into the skin over the port.  The first time, the nurse told Harvey that it would hurt, so I clutched his hand, thinking he would want to hold on to someone.  I ended up gripping his hand.  He didn’t even flinch.  I really believe he has an exceedingly high tolerance for pain.  The truly interesting part though is that when the nurse removes this “cap,” she injects a small amount of Heparin (a blood thinner) into the tube leading to the artery in order to keep any of the blood in the tube from clotting.

The MRI yielded some humorous comments from Harvey.  During the course of the scan, there are a series of varied rhythmic pulses with different tones.  The technician would tell him how long each of these rhythms would last.  So, he began to associate the rhythms and tones with hymns and songs that he knows.  The most distinct in tone and rhythm was the chorus of “Rule Britannia.”  At one point, he said the machine actually began to shake, and that, along with all of the noise, reminded him of “Annabelle,” his first car.

We are both pleased that he has no more health care appointments until next Tuesday.  He feels very well, and most of the remnants of the radiation have faded.  We are more than grateful.

Late last week, I became somewhat concerned by the fact that Harvey had not been contacted about the three scans that the doctor had ordered.  You may recall that he needs to have an MRI brain scan, another PET scan and a CAT scan.  So, I mentioned to him that perhaps he should call the coordinator to inquire if the dates had been set.  He said that he would send an email.  I suggested that a call might yield a quicker result.  He sent the email.  Enough said! The next day he received an email reply expressing surprise and  telling him to call the scheduler directly.  After an avalanche of phone calls, he finally has appointments for all three tests at various times this Friday and Monday.  The doctor needs to have the results before Thursday, 8/16.  Hence, the rush.  Monday is our 46th wedding anniversary.  I guess he’ll be glowing and I’ll be sewing.

Harvey is making the most of the nurse’s order not to lift anything heavier than a milk carton.  Concerned about how long the grass was getting in the front yard, he suggested that I run the mower round.  Granted, the yard isn’t much more than a postage stamp, and I felt certain that I could make quick work of it.  Getting the mower started was somewhat difficult, but the real difficulty came when I realized that there was no power to the wheels.  Our mower is over 25 years old.  At one point, I was nearly prostrate trying to push the mower up a small graded area.  Worse than that, however, was when a man drove by, slowed down and gave Harvey the “thumbs up.”  It crossed my mind to show him another “digit up.”

I am enjoying my new job playing the piano for Grace Lutheran Church in downtown Lincoln.  I am being forced to step out of my comfort zone and explore musical skills that I didn’t think I had.  This Sunday, I am accompanying a young lady who sings and plays the guitar.  She will perform “Waiting Here For You” by Chris Tomlin.  I wasn’t sure I could do it, but in rehearsal, it went quite well.  I’m glad I have the piano, and I will always be grateful to my parents for insisting that I continue, even when I wanted to quit.  It brings me a great deal of pleasure and satisfaction.  Now, if I could just get Harvey to resurrect his accordion…?

Early this morning, Harvey went to his regular doctor for an ECG.  It seems there was some kind of emergency going on at the office, so it took a little longer than it should have.  But, the doctor pronounced Harvey’s heart as “just about perfect.”  Later, when he went to the pharmacy to pick up a prescription that the dermatologist had called in for a skin ointment, his heart skipped a few beats.  Upon finding out that it would cost $90, he decided against having the prescription filled and will use the samples more sparingly.  After lunching with friends, we went to the Radiology center for a “port check.”   Annie, the  very nice nurse who helped in the surgery, came into the office, looked at the wound, and ruled it “beautiful.”  I don’t think Harvey is accustomed to having a young woman refer to him as beautiful.  Thank God his heart is strong!

I may have mentioned earlier that Harvey has two friends in Rotary who have survived melanoma and the three of them have decided to form a club.  It did not take them any time at all to decide on the location for their clubhouse.  Beerman’s, our local brew pub, was the obvious and unanimous choice.  They are meeting for the first time Wednesday night, and I am sure they will come up with some sort of password and secret handshake.  Harvey is going to propose that they call themselves “The Merry Melanomsters.”  The others may have their own suggestions so we’ll have to wait and see.

Harvey still looks pretty beat up.  The skin on his cheek and neck is very dry, with cracks appearing overnight.  He also has a considerable amount of peeling skin at which he is tempted to pick.  The redness has diminished greatly since Saturday and some of the swelling seems to have gone down.  I’m really hopeful that the worst of the radiation side effects is over.

I have discovered that the most important thing for me is my exercise schedule.  Maintaining my endorphins at an elevated level helps to keep “the blues” away.  Over the weekend, I did not manage to walk my usual 10,000 steps, and by Sunday evening, I was pretty sour on things in general.  But, this morning I did walk and then did a Zumba class this evening. Et Voila!  I’m back on top of things!

When Harvey left the radiologist’s office after his last treatment, the doctor told him that the side effects of the radiation would peak in about a week.  So, that would be yesterday, and he was right.  Over the past few days, Harvey has really not felt like himself.  He’s been a bit tired and uncomfortable.  He insists that he is not in pain, but there is discomfort in the radiated areas of his face, and now, where the port has been installed.  However, in the case of the port, it is the bandage that annoys him.  Thankfully we can remove the offending bandage tomorrow morning and he can have a proper shower.  Perhaps it is wishful thinking, but I really do believe that he looks much better today.  Though his face is still a little puffy and red, it does not seem to be quite so angry looking.  He is enjoying the fact that he cannot do any heavy lifting while I drag in all of the groceries, including his box of white zin!

We are planning to visit our daughter, Dawn and her family tomorrow in San Mateo.  Thank goodness we have the van since it will be loaded with all of the show and tell items from the past few weeks, including the “death mask” and all of the medical files that he has been saving.  I’m not sure our daughter really wants to see all of this stuff,  but as our only child, she gets to share in all that we do.

It seems as though next week we will have something of a reprieve.  Harvey will have an ECG and a “port check” on Monday, and as far as we know, no other doctor related visits.  Hurray!  He has lost a little weight, so I’m planning to fatten him up a little with my special white chocolate popcorn for dinner.  He is excited.