karenulijohn

After a three month hiatus from his treatment, Harvey began the maintenance phase of infusions with Yervoy on February 5th.  The day before, we visited with the oncologist for a quick physical exam and pep talk.  He reviewed the possible side effects, told stories of the horrible experiences of other patients on the drug, and sent us off with the hopeful statement that Harvey, likely, would not experience side effects worse than he has experienced so far.  The infusion went as expected.  I went shopping and he slept through the whole thing.  He was just waking up when I returned to the center, and we decided to go straight home since he was still feeling a bit sleepy.  That afternoon, he slept for nearly three hours.  Looking back, that was something of a portent of things to come.  Over the past three weeks, he has slept around the clock at night and had two to three naps lasting a couple of hours each, every day.  The following Monday, his birthday, he had to have a CAT scan.  This is part of the protocol for the study.  We did not do much celebrating, however, because by this time, Harvey was beginning to experience some of the unpleasant side effects he had had before, including flushing and low grade fever, loss of appetite, and gastrointestinal discomfort.  He has soldiered on, trying to keep up with Rotary and the Ham Club and now, the Air Fest, but it has taken a bit of a toll.

Now for some good news. He is beginning to feel better, and his appetite is slowly returning.  He finally called the oncologist to report his experiences, and they had a fairly long conversation last night.  The big news from that discussion is that the CAT scan was negative for any cancers.  We are thrilled.

Yesterday, Harvey and I visited an ophthalmologist as part of the study protocol.  Dr. Meister was very nice, but wasn’t exactly sure what the purpose of the exam was.  In any event, he announced that Harvey has a cataract in his right eye that should be removed if he wants to see better.  This leads me to digress and tell the story of Harvey’s new glasses.  A month ago, he decided he needed to see the optometrist to get a new prescription.  We both like Melody Quenzer very much, so he made an appointment and subsequently purchased a new pair of glasses.  Now, in the forty six years we have been married, I have never known him to get a new pair of glasses that he did not complain that the prescription wasn’t right. This was no exception.  To prove his theory, he spent several hours out in the garage, testing his eyes using binoculars, and came up with the exact settings that allowed him to see perfectly out of his right eye (the one with the cataract).  He went back to Dr. Quenzer and told her that the glasses were no good and that he was returning them.  Of course, she retested him and said that she could make the prescription a little stronger.  He agreed, and now has the new prescription, but…  Back to the ophthalmologist.  Harvey recounted his experiments, and the doctor refuted his supposition by pointing out that the binoculars magnified the target.  In any case, Harvey was reluctant to set a date for the cataract surgery, but I assured the doctor that we would be calling him in a day or two to set up the appointment.

On our way home, Harvey was recounting what our wonderful Dr. Rowntree in London used to tell us.  “You’ll go along very well and then bits will begin to fall off.”  Thankfully, no “bits” have fallen off, but it is clear that there are challenges to growing older.

“No need to have it operated on.”  Those were the first and most wonderful words out of the vascular surgeon’s mouth this morning.  You will recall from the last blog that Harvey had been told by the oncologist that he had an aneurysm of the aorta.  I must correct a mistake that I made in that it is not on the descending aorta, but the ascending aorta just above the  apex of the two atrial heart chambers.  Also, the 4.8mm refers to the diameter of the aorta, not the length of the aneurysm.

We were not able to get an appointment with Dr. Cardozza in Roseville, so we were referred to Dr. Michael Ingram in Sacramento.  We were greeted by a very nice young man named Chris, a PA working with Dr. Ingram.  He asked all of the usual questions and did a cursory examination and made sure that he had all of the copies of tests and ECG’s that Harvey had had done.  When Dr. Ingram finally made his appearance, I thought it was the reincarnation of Walther Mattheau.  He was hairy and disheveled and shuffled into the room just the way Mattheau did in “Grumpy Old Men.”  But after his first words, we didn’t care what he looked like; we loved him!  He explained that a man of Harvey’s size generally has an aorta of approximately 3.5mm in diameter.  When there is tension on the wall of the aorta, it balloons and as the tension increases, there is the chance that the aorta will dissect or “burst.”  However, not everyone is exactly the same inside, and it could be that this is the normal size of Harvey’s aorta, or that it could have been 4.8mm for 40+ years.  The fact that Harvey is asymptomatic for any heart issues means there is less than a 5% risk of a rupture.  Dr. Ingram went on to say that if it was his mother, he would tell her to leave it alone.  At this stage, there is more risk involved in the surgery to repair the artery than risk of it popping.  Since Harvey will be having regular CAT scans every 3-6 months, the doctor just said to keep an eye on it.  If, in the next year, it grows to 5.5mm, then maybe he should think about having it repaired.  The repair, by the way, entails removing the affected area and replacing it with a Dacron sleeve.  For more information go to the following URL: http://health.usnews.com/health-conditions/heart-health/aortic-aneurysm/treatment

When we left the office, we just stood outside and hugged.  We were so relieved.  I asked Harvey how he felt and he said, “I feel like crying!”  He looks very cool and calm, but he is human too, and I know he was worried, though more about having to have another surgery than anything else.  We decided to celebrate at Habit Burger with a big, juicy cheeseburger and fries.  No milk shakes, however.  We didn’t want to push our luck!

Today was results day when we visited with the oncologist this morning.  Dr. Colbourne told us that the CAT scan showed no signs of cancer and the blood work came back normal.  Something in his demeanor kept us from jumping up and down with joy, so we waited for the other shoe to drop.  And, it did!  CAT scans see all, apparently.  Apart from possible gallstones and diverticulosis, Harvey has an aneurysm on the descending aortic artery.  It is about 4.5cm and slightly below the heart.  The possible consequence of this was graphically described by the doctor when he said, “if it bursts, you’ll feel a quick pain and you’ll be dead in less than a minute.”  To this, Harvey only replied, “good!”  Dr. Colbourne went on to say that this aneurysm appears to be stable and its location and size are not as worrisome as it could be if it were larger and a few cms closer to the heart.  Thus, we will add a new doctor to our list with a visit to the cardio-vascular surgeon, Dr. Cardozza.

As we were driving home, I asked Harvey if he was worried.  “No,” he replied.  “There is no point in worrying about something I can’t change.”  At that, I burst into tears and told him that I was afraid.  I can’t imagine my life without him.  Fortunately, that opened up a good dialogue which provided a release for me, and I think for him too.  We agreed that we need to cherish each other and the time we have together all the more.

Yet, life goes on.  I walked my five miles, got a haircut, and did some shopping at CVS.  He is at a Rotary connected meeting this afternoon, and will chair the HAM club meeting this evening.

Here are some statistics you may be interested in regarding Harvey’s medical issue.  He has had 37 medical appointments since April including 3 surgeries, 5 radiation treatments, 2 PET scans, 2 CAT scans, 1 MRI, 4 Yervoy infusions, and numerous  blood draws.  They sure add up, don’t they?

Tomorrow morning, Harvey will have a CAT scan as part of the study to follow up on the first phase of the treatment.  He will “donate” more blood on Tuesday, and then, the following Tuesday we will meet with the oncologist to go over the results.  We are hopeful that the scan will not reveal any rogue cancer cells anywhere which will mean that his body is successfully annihilating the melanoma cells.  We hoped that we would not be making the trip to Sutter quite as often during the next twelve weeks, but we heard otherwise from the nurse who did the blood draw last Tuesday.  It turns out that the port itself needs to be “flushed” at regular intervals of every three to four weeks.   As always, he is taking this in his stride, and on the surface, seems totally unaffected.

I, on the other hand, seem to be experiencing all of the side effects that he is not.  Since I am a person who is susceptible to suggestion, I have been known to acquire symptoms of obscure diseases just from hearing about them or watching shows depicting illness.  Many years ago, Harvey banned me from watching “Dr. Welby, M.D.” when I told him that I thought I might have leprosy.  The episode of Dr. Welby a week earlier had been about a young girl who discovered a rash on her hand, similar to the one that I had.  Unlike her, however, I had not visited a leper colony.  After two episodes of “House”, Harvey made it clear that it was dangerous for my health to watch such a show.  I am, however, allowed to watch shows that depict autopsies, like “NCIS” and “CIS”, presumably because if I get one of those, I won’t know it.

As always, we thank you for your thoughts and prayers and support.

On Monday afternoon, Harvey kept his appointment with the oncologist.  Happily, we had nothing to report in the way of side effects or other difficulties after the third infusion.  It was actually quite a jolly visit with both men commenting on whether their bellys looked like a six month or nine month pregnancy.  After all of the hilarity ceased, we did discuss what would be required of us in the intervening twelve weeks before the maintenance phase of the treatment is to begin.  Harvey will have a weekly blood draw for the next two weeks and then a CAT scan sometime during the third week.  Another appointment with the oncologist has been scheduled after that, plus an appointment with our dear surgeon, Dr. Owens.  We had hoped that Harvey would have a break from doctors for twelve weeks, but at least the infusions are over for a while.

Tuesday morning we headed for the infusion center.  Lucia took care of Harvey, and as in the past, she was very cheerful, kind, and extremely efficient.  She was also very pretty, which did not go unnoticed.  Once she had him all hooked up, and had infused the Benadryl,  Harvey became very sleepy.  So, I tucked him in and went over to the mall for my walk.  When I returned an hour and a half later, he was still very dozy, and told me that he had slept the entire length of the infusion.  Since his reaction times seemed so slow, I was glad that I was there to drive him home.  Surprisingly, he did not fall asleep after that until bedtime.  In fact, he forgot to go to a meeting he was scheduled to attend until a phone call from the hostess reminded him.  He admitted that he does feel less energetic than he remembers being before all of this began, and I agree that he does seem to sleep more.

Yesterday, before arriving at the oncologists, we stopped at Starbucks.  Now, I have to say that Harvey loathes the regimented ordering process that Starbucks imposes and refuses to use Starbuck “speak.”  He ordered a small hot chocolate.  The young man behind the counter queried, “Is that a tall?” to which Harvey replied in a firmer voice “Yes, small.”  Then came the most unpleasant question of all.  “And the name on that, Sir?”  Harvey maintains that they never use the name that he gives anyway, so, in the past, he has used such monikers as “Oni,” “Minus 7,” “Snake,” etc. Still, when the drink is ready, the barrista calls out “Non fat cocoa, no whip!”  Yesterday, Harvey answered the young man with “Rof.”  “Is that Ralph?” the young man said.  “No, it’s Rof; R-O-F,” came the answer.  “Coming right up, Sir.”  As we were walking away from the counter, I said “Oh my gosh, what does that stand for?”  Harvey got this self-satisfied look on his face and said “Recalcitrant Old Fart.”  I reminded him that if he is banned from all of the neighborhood Starbucks, he’ll be back to drinking instant Sanka at home.

It has been exactly two weeks since Harvey’s third infusion and, dare I say, no unpleasant reactions.  I have been reluctant to write fearing I might trigger some little demon waiting in the wings, ready to appear if we become too complacent or confident.  So, hopefully, my next blog will comment on the fourth infusion next Tuesday.  We have felt somewhat guilty that we abandoned our trip to Spokane last week in view of the fact that nothing happened.  But, the anxiety of being away from home and doctors outweighed the negative sentiment.

I’m sure that by now you know what a worrier I am.  During these past couple of weeks, when I would awaken in the middle of the night, I would contemplate the reason for coming suddenly awake.  Should I check Harvey’s temperature?  Is he breathing all right?  So, I began holding my hand slightly away from his forehead while he was sleeping, trying to feel if there was an inordinate amount of heat.  Of course, it was dark, and my hand wasn’t always steady, and occasionally I would inadvertently touch an eyebrow, or actually tap his head.  He would awaken with a start.  I would hold very still, hoping he wouldn’t notice me, but he did.  “What are you doing?” he would ask.  “Just checking” was my reply.  “I thought it was a spider”, he remarked.  And then, “You are one crazy broad!”

I am happy to report that Harvey’s appetite has come back with a vengeance and that I am working diligently to provide nutritious and tasty meals.  I have warned him, however, that this is not likely to last, so make the most of it.  Seriously, we are enjoying our NuWave Oven and have found it to be a real asset to our kitchen.  We can fix meals quickly with little fuss and very little cleanup.  I finally moved into the 21st century and bought a hand (stick) blender and was able to make my pumpkin soup in half the time it has taken me in the past.  Love it!!

Since the feverish weekend, Harvey has been feeling more like himself each day.  By Thursday, he was much improved and was even able to eat the chicken at Rotary.  For some reason, he had developed a severe aversion to even the thought of chicken, in any form.  He was feeling so well on Friday morning that he went to Lowe’s and bought some sod to replace the brown patches in the front and back lawns.  I suggested that he might be pushing it a bit considering what he had just been through, but then realized that I was just talking to myself.  He listens, smiles, agrees with me, and then goes on to do exactly as he wanted to all along.  On Sunday, we drove to San Mateo to spend time with our daughter and her family.  What a wonderful day that was, eating, laughing, playing cards, shopping, laughing (did I already say that?).  The time flies by and we are exhausted as we drive home, but only because we have enjoyed ourselves so much.

We went to see the oncologist, Dr. Colbourn, on Monday afternoon.  He was very interested to know the details of Harvey’s fevers, loss of appetite, and, it turns out, loss of five pounds since the last appointment.  Of course, he is supposed to keep a diary detailing these events which he has done, but he did not bring it along.  So, it falls to me to remember everything.  In any case, the Dr. assured us that, while he suspects the fevers are related to the Yervoy, it is not a signal that Harvey is experiencing a toxicity reaction to the drug, and therefore, we should not be too concerned.  I asked him what constitutes an emergency when it comes to high fever.  He said that it is really a judgement call, and that if Harvey had been shivering and shaking along with the 103 temperature, that might have been a more serious problem.  Or, if the Tylenol had not worked in bringing down his temperature.  I remember at the time that I made Harvey sit up and take the tablets, which he was able to do.  He also joked with me.  Since these fevers have come on approximately eight to ten days after the infusion, I have marked the calendar to be on the lookout.  By the way, if there is a “toxic” reaction to the Yervoy, the Dr. will immediately prescribe Prednisone.  Before we left, we asked one final question.  “What do you think of our plans to drive to Spokane next week?”  The Dr. gave a wry smile, shook his head, and said, “Well, it’s up to you, but I wouldn’t.”  Hence, we have abandoned our plans to visit Harvey’s 100 year old mother until the spring.  I know that she will understand!

Yesterday marked the completion of the third infusion.  Fortunately, there was no blood letting, only the few vials they require to make sure he is healthy enough for the therapy.  As before, I waited until the Yervoy was dripping in, and went off to the mall.  His appointment was at 11:30AM, which is right around the lunch hour, so no one else  was being treated at that time.  He told me later that he slept for most of the hour and a half that I was gone.  When I returned, they were just cleaning him up, and we were able to leave.  This morning, we got a call from the lab that the blood draw they took yesterday had been compromised in some way and that he would have to come in again tomorrow morning to give more.  We are not altogether sure what all of this means, but …

You might be interested to know what happens to the blood that is drawn, particularly the 22 vials taken during the first and second infusion.  Kirsten, the study coordinator answered our question as follows:

“The study blood is used to examine the effects of both treatment groups on the different cells that make up your blood and to look for special markers that may help us identify patients who are more likely to benefit from these two drugs.  This helps develop a deeper understanding of the biology of cancer treatments.  You also agreed to have the study use some of the blood for future cancer, and other diseases (like heart disease, diabetes or Alzheimer’s) so some of the tubes will be used for this.  You are not expected to learn any of these results as the tests are blinded.  And the blood is sent to University of Pittsburgh which should make Karen happy. :)”

So, we are now more than halfway through the first phase of the treatment.  Please keep Harvey in your thoughts and prayers over the next couple of weeks as we continue to hope for few side effects and as normal a life as possible.

Friday night, after my last post, we went to the Lincoln Rotary Social evening where it became very clear to me that Harvey was not feeling well.  He barely ate a thing, and sat in one chair on the patio throughout the evening.  Even more telling, he took a pass on the wine.  We took our leave and had an early night.  I awoke around 1:00AM and was not able to fall back asleep.  Finally, around 3:00AM, I decided to check on him and when I touched his forehead, it was blazingly hot.  His fever registered 103 degrees F.  After two Tylenol, he went back to sleep immediately.  I checked several more times and then must have finally drifted off to sleep.  Around 6:00AM, it was clear that he had experienced a severe night sweat.  The bedding was very damp.  When he finally got up on Saturday morning, he rallied enough to go pick up the rear tail light lens from the Chrysler dealer.  However, the effort of standing in line and waiting for over half an hour took its toll and he slept most of the afternoon.  By this time, I was giving him Tylenol every six hours to try and keep the fever at bay. Despite his having no appetite, and feeling very listless and tired, he fixed the backup light on the Chrysler and even did some touch up to the paint.

Sunday morning, I went off to play for the church service, leaving him sleeping in bed.  When I got home, he was sitting on the patio, reading his paper.  I noticed that the lawn had been cut.  Yes indeed, he had mowed the lawn.  I figured if he felt well enough to mow the lawn, he could take me to the grocery store.  He still had little appetite and had had a small (tiny) bowl of cereal for breakfast.  I talked him into  some frozen yogurt, and while we were shopping, I tried to gauge his interest in anything for dinner.  The only thing that appealed was pumpkin pie.  He slept again for most of the afternoon while I hand-finished my sewing project and watched the movie “What to Expect, When You are Expecting.”  Harvey did not experience any fever on Sunday and by the evening, after the pie, he was feeling (and sounding) more like his old self.  We had a few laughs watching an old Abbot and Costello film, marveling at how silly they were, and wondering who determined that mummy’s should roar and growl.

Yesterday, we telephoned the Dr. and spoke to the oncology nurse.  We reported all of the above.  She said that if his fever goes over 101 degrees F again, we should call, even if it is the middle of the night on a weekend.  However, the treatment suggestion would have been the same: take two Tylenol!  Though he still felt a lack of energy, we did have a nice day pottering around the house.  I tried out my NuWave oven on some frozen hamburger patties.  The flavor was good, but the patties themselves were a little rubbery.  I also steamed some cauliflower and dumped a bunch of butter and cheese on it.  I think he liked that the best.  We were feeling hopeful that we had weathered the storm, but at bedtime, I noticed that he was very warm again.  His temperature was 101 degrees F, and the Tylenol dosage began again.

This morning when I checked on him, the bedding was soaking.  I read a little bit about night sweats and discovered that they can be caused by hormonal changes.  In fact, that is one of the side effects that was described in the Yervoy drug details.  Good nutrition and exercise can go  a long way in helping to prevent them.  It probably wouldn’t hurt either of us to be more careful about day to day nutrition.  I’ll try!!

It has been over ten days since last I “blogged,” and it seems as though we have been keeping ourselves very busy during the interim.  Harvey has been working in the garage, re-organizing the boxes and looking through everything, reminiscing about some of the treasures we have accumulated.  So, I was not surprised to find him there when I arrived home after a very pleasant shopping day with my friend Carol, who is helping me select my next sewing project.  It turns out that the button on the hand brake of the golf cart had “exploded,” rendering the vehicle inoperable. He telephoned the golf cart dealer inquiring about a replacement part and was told that it was back-ordered for over a month.  Since this is now our second vehicle, there is some urgency about getting it repaired.  So, Harvey took the whole brake handle assembly apart and devised a way to fix it.  Off he went to ACE Hardware to purchase a special die, a plastic tube cover and a screw, all for under $10.  The golf cart is now back on the road, and I suggested that we might be able to make a little money selling his idea to all of the people waiting for the back order.  His creative solutions have always worked with one possible exception when he went head to head with a squirrel who was stealing nuts from the bird feeder.  But, that’s another story!

That same day, he had taken his golf clubs up to the driving range to hit a bucket of balls.  Naturally, I asked him how he did.  He said he thought he might be having a reaction to the Yervoy.  I was immediately on point, awaiting details of some side effect.  It turns out that the only side effect was that it had not improved his golf game.  I told him that only an act of God could improve his golf game.  We did have a good guffaw over that.

Speaking of reactions, however, he did experience a spike in his temperature again last night.  He had looked a little pale when we were at Rotary and he later told me that he didn’t eat much.  After he got home, he slept for a couple hours out on the patio.  When he came in, he told me he didn’t feel very well and had no energy.  Upon taking his temperature, the thermometer registered 102 degrees F.  We followed the same process as last time this happened, and he took two Tylenol.  Within an hour, he was feeling much better and even felt like eating a bit.  So we dined on a sumptuous meal of gourmet saltines and peanut butter and grape jelly.

This morning he went to watch the model airplanes fly, out by the recycling center.  He was disappointed that the model owners spent most of their time talking and not enough time flying the models.  I’m sure he was a little grouchy about that, but his “grouchometer” rang the bell when he backed the car into a temporary parking sign of some sort and scraped the rear bumper and broke the brake light cover.   He was able to rub out most of the scrape marks and will pick up the new light cover tomorrow.  He may even be able to touch up the paint.  Unfortunately, it will cost a little more than $10.  That’s life!

It has been about a week since last I posted on my blog.  I hope that you inferred that our lives were continuing normally.  In fact, we had a wonderful visit with our daughter and family, celebrating our son-in-law’s birthday and cheering our grandson’s soccer prowess.  On Friday night, we went to our connoisseur wine tasting group.  We actually purchased a rather expensive $10 bottle of cabernet and still we ended up with the “booby” prize.  Years ago, we had been invited to friends’ home for dinner and to enjoy a bottle of aged Rothschild wine that our host had acquired at an auction.  He uncorked the wine at the table, poured a little into a crystal goblet, admired its clarity, carefully sniffed, then sipped it delicately.  Suddenly, he made a horrible face and declared the wine undrinkable.  With that, he rushed to the kitchen and began opening and pouring the entire case down the sink.  I had to restrain Harvey from diving under the sink with his mouth under the drain.  We were rather naive in those days and, for all we knew, the wine might have been the Rothschild equivalent of “two-buck chuck.”  Harvey still maintains that he has never had a glass of wine he didn’t like.

Yesterday, Harvey saw Dr. Colbourn for a routine visit to discuss how he has fared over the past three weeks.  We had to wait about 45 minutes, and when the Dr. finally came in, his right hand was in a very bulky cast.  He said he was running late because he was having difficulty writing.  He then began singing to Harvey.  Neither of us can remember what he was singing or why, but it was a very lighthearted visit.  Earlier in the day, Harvey had a dental appointment, at which time, the dentist found several lesions on his tongue.  Despite Harvey mentioning his recent radiation treatment, the dentist insisted he should see an oral surgeon and have a biopsy.  We were relieved to hear Dr. Colbourn say “forget it!”

Today, Harvey had his second infusion of Yervoy.  The process was exactly the same as the first dose, including the blood letting.  I left him for an hour and a half so that he could relax and nap.  When I returned, they had just removed the line, and we bid everyone goodbye until next time.  I think the Benadryl makes him sleepy, so when we got home, he took his QST magazine to bed with him and slept for a couple of hours.  Tonight, he is overseeing the Ham Radio Club meeting.  He really is amazing!