karenulijohn

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!!