karenulijohn

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!

As a result of Harvey’s bout with melanoma, he formed a group of melanoma survivors and called the group “The Merry Melanomsters.”  There are now five members who meet about once a month at their new clubhouse, the Infusion Taproom in Lincoln which is fully stocked with local selections of craft beer on 20 rotating taps, ciders, bottled beers, and wines along with dining selections from neighboring restaurant Siino’s.  On Monday evening, this happy band met for a prolonged “hopfest.”  They are all Rotarians and enjoy the fellowship, affection, and laughs associated with common interests and experiences.

On Tuesday, Harvey traded the “hopfest” for a “chemofest.”  We arrived at the hospital at 10:30 AM for an appointment to have a PICC line installed.  PICC is a short name for “Peripherally Inserted Central Catheter” and is inserted into a large vein in the arm, usually the basilic or cephalic vein, that leads to the heart.  Suman, the nurse who installed the PICC was a very cheerful, chatty woman who said she had been performing this procedure for 20 years.  She asked Harvey if he wanted her to tell him everything she was doing and he said “not really” but she did anyway.  The entire process took about an hour and a quarter.

We had about an hour or so before his chemo appointment, so we decided to try the hospital cafeteria.  He enjoyed the navy bean soup and I had a very nice salad from the salad bar.  We then found our way to the Infusion Center which is located on the third floor of the hospital.  One wing has been allocated in such a way that each hospital room has two lounge chairs and a small couch to provide seating for the caregivers.  Harvey’s nurse, named Barbara, who had been an ICU and Cardiac nurse, was also very interested in holistic treatments.  She gave Harvey his premeds which included Benadryl, Pepcid, Zofran (for nausea) and a steroid.  As she began to dispense the Taxol, she recited a poetic couplet calling on a higher power for comfort and healing.  The Taxol infusion takes 60 minutes and the Carboplatin is 30 minutes.  The Benadryl made Harvey sleepy, so once the infusions began, I left to go shopping at The Fountains, and he had a nap.  When I returned at 4:00 PM, the infusion was just about finished, and I had spent all of his money!

On our way home, we stopped at Raleys to pick up a few things, and he decided he wanted some macaroni and cheese.  Once home, he finished the entire portion and then made himself a smoothie with Ensure, yogurt, banana and milk.  Since Sunday, he has gained two pounds.  I am glad he is taking it seriously that he needs to keep his weight up and to eat as nutritiously as possible.

He has experienced no side effects at all except this morning when I noticed that his face is flushed.  We are meeting this afternoon with Dr. Suhag’s nurse for our “orientation” outlining what to expect with chemotherapy and radiation.  Next Tuesday, he has an appointment with his Melanoma surgeon, Dr. Owen, then he has an appointment with Dr. Jones, the radiation oncologist, to map out the area to be radiated.  At 2:00 PM, he will have his second chemotherapy treatment, after which he will see Dr. Suhag.  Sutter Hospital is likely to be our new “home away from home.”

By late Wednesday morning, we had heard nothing from the infusion center concerning an appointment on Friday for Harvey’s first chemotherapy treatment.  He telephoned Dr. Suhag’s office to nudge them into setting a time, but was told my Mitzi, the appointment coordinator,  that they had not heard from Dr. Graves, who must sign off on the request.  To top it off, he would not be back in the office until Monday.  How could this happen since Dr. Suhag had been so proactive in making sure everything was ready for a Friday start date?

It struck me as paradoxical that on the one hand, Harvey is dreading the effects of the chemotherapy and all that goes with it, and yet, he is more than anxious to get started, frustrated by the bureaucracy and administration.   Obviously, there are important tangential circumstances that feed into his desire to begin treatment.

Later in the afternoon, the infusion center, in the main Sutter Hospital in Roseville, telephoned to set up a series of seven treatments to be given on Tuesday afternoons at 1:00 PM.  He was told that he would be there approximately two and a half hours each week.  Somehow, Dr. Graves’ office had managed to get an approval.  We were relieved that treatment was finally about to begin.  He will need to have a blood draw before each treatment, and barring any difficulties there, the treatments should continue as scheduled.

We have several events to look forward to in the coming days, not the least of which is Harvey’s “kickout” as president of Lincoln Rotary.  Rather than promote the new president, the old president is “kicked out” with a dinner and “roast.”  On Friday we will be having dinner with a group of friends previously known as “The Wine Group.”  It has since morphed into a potluck.  Sunday we will celebrate Father’s Day with another couple from the church.  Soup, Ensure, and ice cream are fast becoming  staples at our meal times, but everyone is very accommodating and understanding of the situation.  We are beyond grateful!

Let me start by saying that there were no new discoveries today, only confirmation of what we already knew.  We arrived at the surgery center this morning at around 8:30AM for Harvey’s 9:30AM appointment.  There was some traffic on the Capitol City Freeway, but we flew through most of the way.  We were happy to discover that the surgery center offered complimentary valet service which shortened our travel time considerably.

The check in was very efficient and Harvey was prepped and ready and wheeled into the theatre at approximately 10:40AM.   Just before he was wheeled away, we met with Dr. Dredar, who would perform the procedures.  He was very young looking and seemed almost shy but very businesslike.  We thought it was interesting that he directed most of his comments to me and only occasionally looked at Harvey.  I always get mad when that happens to me, but Harvey didn’t seem to mind, or care for that matter.   I watched the nurse wheel him down the long, empty hall, and I went to have a cup of tea.

While waiting in the main lounge of the building, I suddenly heard the sweet tones of the Moonlight Sonata being played on the piano.  I looked over the balcony and there, in the lobby, was a young Asian boy of approximately 14 or 15 playing a beautiful baby grand piano.  He went on to play a piece by Chopin and another that I didn’t recognize.  He was very good for one so young, and I was grateful for his music.  It truly calmed my spirit.  While I was ordering my tea, a nurse, dressed in street clothes, obviously an administrator of some kind, asked me how I was and if there was anything she could do to help me today.  I assured her that I was fine and that many people were praying for my husband and me.  Both Harvey and I are so struck by the kindness and caring that we have experienced during these trying times.

I returned to the waiting room about an hour later,  and was called into the recovery area soon after.  Harvey was wide awake and not nearly as groggy as the last time he had the endoscopy.  He insisted that they did not put him completely out, and that he was able to feel the scope down his throat.  He even recounted some of the comments the doctor made during the procedure.  When the doctor came to speak to us, Harvey repeated this, and Dr. Dredar explained that there is a fine line with sedation where, if they give too much, the patient can stop breathing.  Obviously, they did not want that to happen.  Harvey had not been in any pain, but more discomfort.  The nurse and I “clucked” over him so that he felt sufficiently mollified and comforted.

The EUS showed that the tumor is a T3 N2.  T3 indicates the cancer is growing into the outer layer of the esophagus (the adventitia).  N2 shows the cancer has spread to 3 to 6 nearby lymph nodes.  Because the doctor was unable to get the camera passed the obstructing tumor, he was not able to make a complete study.  With chemotherapy and radiation, he is hopeful that the tumor can be reduced in size by more than 50%.  Then, surgery.  If Harvey is not able to keep his weight and energy up during the treatment because of problems swallowing, Dr. Dredar suggested putting in a stent to open the esophagus.  Harvey liked that idea better than the feeding tube in the stomach.

Dr Dredar then asked Harvey if he had ever had severe ulcerative colitis.  I chimed in that “yes, it nearly killed him three years ago.”  When I explained further the details of the Yervoy (ipilimamub) study, he understood exactly what I was talking about.  So, that was what showed up on the PET scan that needed to be confirmed.  No signs of cancer in the colon.  Praise God.

On Monday morning (yesterday), we had a meeting with Harvey’s oncologist, Dr. Suhag, who is off on a ten day vacation to Peru.  In anticipation of this diagnosis, he has set up an appointment to begin chemotherapy on Friday, June 17th, this week.  A PICC line will be placed, as opposed to the dreaded Port, so that we don’t have any collapsing veins.  He will receive carboplatin and taxol once a week for seven doses.  This will be given concurrently with radiation treatments. Dr. Suhag has also prescribed, and we have picked up from the druggist, two drugs to counteract possible nausea.  He explained the possible side effects as follows: nausea (1% chance of vomiting), fatigue (80% right after treatment), low blood counts (weekly labs will be required), infection (1%), tingling of the nerves in the extremities, hair loss, and constipation.  Off all of these, Harvey is most concerned about the hair loss.  He said it has taken him so long to get as much as he has, he is loath to see it disappear.  I told him that, as it is our 50th year together, it is only fitting that he looks like he did when we met.  He was the original Kojak!

Thank you for following us on this journey and for your continued healing thoughts and prayers.

Once you are a patient in the healthcare system, you become a player in The Waiting Game.  You will learn to wait for an appointment with the doctor, then wait for a referral, wait for test results and the follow-up with the doctor, and then wait for the diagnosis and treatment program, and on and on.  Can anyone wonder why patients are frustrated and anxious, particularly those with cancer where the watchwords are “early detection, prompt treatment?”

Harvey has found himself in this situation since seeing Dr. Graves last Wednesday.  As we left the doctor’s office, we were told that the referral to the gastroenterologist’s office would be sent immediately, and that we should hear from them in a day or so to set up an appointment for the EUS and colonoscopy.  Well, Thursday came and went, and by Friday afternoon, Harvey was concerned and phoned Dr. Graves’ office.  The office assistant seemed surprised that he had not heard anything and suggested that he contact Dr. Dredar’s office directly.  Following her suggestion, he spoke to Dr. Dredar’s office assistant, and after a lengthy patient identification process, he was told that she did not see any referral for Harvey.  I really expected to see the telephone handset slam down and pieces of the phone scatter across the room, but to my surprise, he was quite sanguine, and telephoned Dr. Graves’ office again.  Of course, it is Friday afternoon, so he knew nothing would be done before Monday.  No call on Monday morning!  After several more rounds of phone calls, the two doctor’s offices finally connected around 3:00 p.m. and an appointment was scheduled.

Please continue to keep Harvey in your thoughts and prayers, and particularly on Tuesday, June 14th at 11:00 a.m.  The procedures will be performed on the same day in Sacramento.  We are hoping that the tests will show no spread of the cancer to the surrounding lymph nodes and no metastasis to the colon.  Once the results are reviewed, hopefully Harvey can leave the diagnostic phase behind and begin the treatment phase.

I find it curious that, in this world of fast internet connections and instantaneous newsfeeds, it took close to five days for the referral to go from one doctor’s office to the other a block away.  Well, that’s The Waiting Game for you!

I would like to start off by telling you of a short conversation that took place this morning at the gym.  I promise that it does relate to our issue, so please bear with me.  I was telling two of my friends about Harvey’s recent diagnosis and a third party, who had been listening, spoke up and said that her husband had the same thing and that he had had surgery with no radiation or chemo follow-up, and five months later, he had passed away.  Though stunningly insensitive, her comments did have an impact on my reaction to the Doctor’s recommendations.

Upon checking in to Dr. Graves office, we were first introduced to Dr. Kevin Izquierdo, (Kevin) a senior resident at UC Davis who works directly on Dr. Graves team.  He was very personable and kind, but told us that they needed a few more tests in order to get as much information as possible about the tumor, its position, depth, stage, and whether there was node involvement.  This can be done with an endoscopic ultrasound.  Also, the PET scan showed a non-specific spot in the colon.  Therefore, they want Harvey to have a colonoscopy.  Both of these tests will need to be completed before treatment can begin.  Kevin told us at this point that they recommend chemotherapy and radiation first in preparation for surgery later.  He assured us that recent studies show that this protocol results in lower recurrence and a good outcome longterm.

We then met Dr. Gregory Graves, a very relaxed and sincerely empathic gentleman, who reiterated what we had learned from Kevin.  His questions centered more on how Harvey was coping with eating, had he lost weight, and how much over what period.  In preparation for the chemo, he suggested that Harvey have a port placed.  Wow!   Did that get a negative reaction!  So, he will go with veins as long as he can.  Dr. Graves will also have a dietician consult with us.  Basically though, the treatment is as we had been told by Dr. Suhag: 25 radiation treatments over 5 weeks and chemotherapy for 6 weeks.

I asked what are the chances of this cancer spreading during the time it takes to get all of these tests and results completed.  He assured us that it is unlikely to spread since it has probably been growing there for a long time already.

As we left the office and were walking back to the car,  we talked about our disappointment at not being able to go with Option 1.  I decided to tell Harvey why I was depressed this morning after my visit to the gym.  In an odd way, telling him what the woman said reinforced our belief that Dr. Graves was recommending the best treatment, the one that would give the best outcome.