karenulijohn

Life goes on apace.  We have simply added doctor visits to our list of daily activities.  On Friday, while I was enjoying brunch with my wonderful friends, Harvey was doing some yard work.  He also made and delivered flyers to the neighbors for which he is mailbox captain, announcing the date and time for the upcoming National Night Out.  Because he is currently serving as President of the Western Placer Amateur Radio Club, he is responsible for organizing the sixth annual Hamfest.  In addition to making arrangements with the city for space at McBean Park, and organizing food and coffee, he is also making “sandwich signs” which will be placed strategically to direct vendors and visitors.  Hamfest is essentially a flea market for radio related electronics.  Then on Saturday, we spent the afternoon with friends enjoying a pizza making contest and, of course, sampling a variety of home made pizzas.  This morning I played at the church and Harvey experienced “bedside Baptist.”  After doing a little housework, we are savoring a quiet day at home.  I mention all of this so that you know Harvey is not sitting around feeling sorry for himself.  We are both encouraged by the love and support our friends and family have shown us.  Thank you to all for keeping us in your thoughts and prayers.

As the doctor predicted, Harvey is now experiencing some uncomfortable side effects of the radiation.  Apart from the angry redness of his cheek and nose, his skin is cracking and peeling.  The pain in his cheek has increased because of the size of the ulcer inside of his mouth.  It makes it difficult for him to eat, so he continues to get most of his nourishment from the grape.  After a few glasses, he says that he feels no pain.  Since I had no idea this ulcer existed until he came back from the Doctor on Thursday, I have been attempting to provide softer food.  This evening I soaked the popcorn in some milk.  As always, he complimented me on my imagination and on how delicious dinner was.  What a guy!!

Due to a change in the schedule, Harvey went for his fifth radiation treatment this morning. The Doctor’s office called yesterday and said that since the Dr. did not see him on Tuesday, and he doesn’t come to the Roseville office on Friday, he would like to see Harvey on Thursday. Similarly to the treatment on Tuesday, it only took about 10 minutes and when he saw the Dr. he was told that he had finished the course of radiation treatments. They had accomplished all that they had intended and that he need not come in for a sixth treatment. Hallelujah!! They discussed the soreness he was experiencing in his face and it turns out he has a very large blister on the inside of his cheek. He was assured that this is quite normal and was given a prescription for an oral rinse to be used every four hours. As Harvey was walking out, the Dr. handed him what Harvey lovingly refers to as “the death mask.”  You will recall that I described this mask in a previous entry.  Looking at the picture below, imagine that his head is fully enclosed and that the left side of his nose, cheek, and neck are exposed through the hole.

Now, we move on to the next phase which is lining up and having all of the tests that are required to determine if he is a candidate for the study.  The blood test needs to be done sometime the week of August 13.  The ECG is scheduled for August 6th.  As yet we don’t have a date for the PET or MRI.  On Wednesday, August 1st at 2:45 PM he will have a port inserted surgically for the drug infusions.  For Harvey, having a port has brought this “adventure” out of the realm of the abstract and into the cold light of day.  He is struggling a bit to come to terms with it.  He does not want it.  My heart cries for him.

The Death Mask

Harvey always used to tell me that he wanted to “will his body to science.” I don’t think it ever occured to him that he would be doing it while he was still living!! The radiation treatment today took no longer than about 10 minutes. He was in and out of there in no time. However, our next meeting was with the research coordinator for the study I mentioned yesterday. We went through a 30-page document describing all aspects of the study including treatment, side effects, follow up, etc. Nothing was left to the imagination. Each page had to be signed and/or initialed stating that Harvey understood the content on the page.

It would be premature to discuss the particulars of each treatment. Before he can be accepted into the study, he has to qualify. This qualification entails more tests, including another PET scan, a brain scan, EKG, and blood work. If he is finally enrolled in the study, he will begin treatment on August 21st. At that point, we will know which drug he will be taking.

On our way home, Harvey told me that he is not afraid. He is apprehensive about the schedule he will have to follow, the possible side effects, and how he is going to feel. I’m relieved that he now has a realistic view of what this diagnosis can mean. I mentioned that he might not feel like doing all of the yard work after the treatment begins, thinking that he might resist my suggestion of getting a gardener. He quickly responded that he had someone in mind. So, I thought I would suggest getting someone to do the cooking as well. He had no one in mind for that!!

As we anticipate the fourth radiation treatment tomorrow, we are beginning to notice some side effects. Harvey has some reddening over the nose and cheek area and down his neck. He is also complaining of minor pain in his cheek, as if someone had punched him. I didn’t do it. Really!! Otherwise, his spirits are good and he has told many friends that he is regarding this as something of an adventure. He has always taken an interest in high tech equipment, and I dare say, one can’t get much more high tech than some of the machines they are using on him.

Tomorrow is also the day when he signs the application as a potential subject in a research study. The title of the study is: “A Phase III Randomized Study of Adjuvant Ipilimumab…Therapy Versus High-Dose Interferon…for Resected High Risk Melanoma.” The purpose is to determine which drug is better at treating melanoma. The computer will choose which therapy the patient will receive. If it turns out that he is eligible, his participation will last for 1 to 1 1/2 years. If he does not qualify for the study, then he will most likely be given Interferon, which is currently the standard treatment. As you can imagine, the possible side effects are legion, and not very nice, but the alternatives may not be very nice either.

More details tomorrow.

Harvey had his third radiation treatment this morning. He said he really did not need me to go with him, so I acquiesced and went for my morning walk. I stopped and had a chat with my friends, and by the time I got home, he was there happily reading his paper. When I asked him how “it” went, he said that it only took about 10 minutes, but there was a little excitement. Naturally, my radar went up since I know that “a little excitement” to him and “a little excitement” to me can exist at opposite ends of the excitement spectrum.

You may not be aware that when he is on the table in this radiation room, he is lying on his back and his feet are strapped down. He is holding a horseshoe shaped object in both hands. His head is held in place by a mesh mask that fits completely over his head and is snapped in place to the table. They then insert a lead plate to cover his eye, a lead guard is inserted in his nostril, and he has a lead mouth guard. There are three people (technicians) who set up the device and who monitor the delivery of radiation from another room.

So, back to the excitement. After the first 15 seconds of the radiation, the lead eye piece slipped off and fell on the floor. Harvey let go of the horseshoe with one hand and gave a little wave. The radiation immediately stopped and the technicians came in to replace it. They assured him that they were nowhere near his eye at that point and that this sometimes happens. After they reinserted the eye piece, they continued with another 20 to 25 seconds of radiation. The second delivery was uneventful. After he was released from the table, one of the technicians said that he did very well. She said that usually people get frantic and start waving their arms and trying to get up. Can any of you think of someone you know who would be one of those people?

Currently, Harvey is out “blowing” off the patio and cleaning up the yard. I think he is expecting me to fix lunch. That seems to be the only “side effect” of his treatment so far!

After Harvey had his second radiation treatment yesterday, we were watching to see if he would experience any swelling on his face or neck.  I am happy to report that there was none.  He did have a little redness in the nose area, but nothing extreme.  So far, he feels very good, although he was surprised that he slept for an hour or so yesterday afternoon.  I wasn’t surprised.  I was under the impression he did that every day.  He will have his next treatment on Friday morning.

As an aside, we went to the CA State Fair this morning and walked around for several hours.  It was really fun and we love the exhibits.  I was particularly taken by the beautiful quilts that were on display.  It is hard to imagine the amount of work that goes into producing one of these works of art.  Harvey enjoyed seeing the robots that are used by the Navy in Afghanistan and Iraq.  He wanted to have a hot dog for lunch but refused to pay $7.95.  I was happy.  We ended up at The Fountains and had a lovely lunch.  I want to believe that if I just don’t worry, things will come right in the end.  

Back in April of this year, Harvey had a small bump on the side of his nose that he kept picking. I told him to stop and when he did, that small bump grew and grew. When he finally managed to get an appointment with his dermatologist, the dermatologist removed the offending bump and said it was probably a granuloma. Unfortunately, when the pathology report came back, it turned out to be a stage 3 melanoma. He was referred to a wonderful surgeon, Jay Owens, whom we finally saw ten days after the report. He examined Harvey and immediately found a swollen lymph node in his neck on the same side as the bump. At this point, Harvey just wanted to get the “thing” removed, and the quicker the better. He was very disappointed that he had to wait until several other tests were performed. The first was a needle biopsy on the lymph nodes in his neck. They came back negative, so surgery was scheduled for Friday, May 15th at 1:50PM. We had to be at the hospital at 9:00AM for a Sentinel Node Injection to determine to which lymph node the offending bump was likely to drain. That was a painful test.

I should say that this was Harvey’s first time ever in a hospital. Actually, he has been very lucky in his life not to have had any serious illnesses. He does not take any medication. When we finally got him registered in the hospital and into one of the ‘Ralph Lauren’ style hospital gowns, we waited! And waited, and waited, and waited. At 5:30PM they finally wheeled him to the OR. Mind you, he had not had anything to eat or drink since 10:00PM the night before. He was surprisingly patient and good natured. Thank goodness he wasn’t “shopping.”

The surgery lasted about 3 hours and Dr. Owens came out to tell me that everything went quite well. The “bump” was quite deep and he had to take some of Harvey’s cheek and form it into part of the nose. He did such a wonderful job, and while you can notice something different, it isn’t bad. After a little skirmish with one of the nurses about pain pills, I finally got him home around 11:15PM. He went straight to sleep and did not awaken until about 6:00AM. He had another pain pill, and was out for most of the day. He did not take anymore pain pills.

On Sunday, when I was out for my walk, someone came to the door to say that one of our sprinkler heads on the side of the house was spewing water. I got home in time to see Harvey gleefully changing into his work clothes to go out and fix the pipe. He could not wait to get out there and do something useful. I didn’t have the heart to suggest that maybe it was a little soon to be working in the yard!

He was referred to a radiologist and a hematologist. One of them ordered a PET scan. The PET scan showed one lymph node shining like a star. Dr. Owens said that it needed to come out. So, a second surgery was scheduled on June 15th. Unfortunately, this lymph node was the one he had felt during our first visit, and it was indeed cancerous. This turned out to be something of a game changer since the cancer had metastasized to one lymph node. Harvey began radiation treatments on July 12th. He didn’t notice any change until the evening when he saw that his face and neck were swollen on the left side. We phoned the radiologist and he said that it was probably the parotid gland (one of the salivary glands) and that this happens in about 1 in 20 people. There is no known reason, but that it should not happen again. We’ll see.

Today was Harvey’s second radiation treatment. I did not go with him for this visit. He decided that he could go it alone. I made sure that he had his list of questions and that he gave me a full and detailed report upon his return. He said they did the same amount of measuring and adjusting and that, by his mental count, each of the two sites got about 45 seconds of radiation. After he spoke with the Doctor about sunscreen vs wide brimmed hats, he went to Starbucks for a hot chocolate and the USA Today. On the way home he stopped at CVS for a “box” of White Zin. I’m happy to say that it truly seems that he is not going to let this change him!!