karenulijohn

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.

Only three more days until we see the surgeon, Dr. Graves, who will decide the course of treatment that best suits Harvey’s cancer.  Dr. Suhag gave us a quick summary of the possible options.

The first option, and the one we think we want, is surgery.  This is only possible if there is no spread of the cancer, and Harvey falls into that category as shown in the PET scan.  It involves removing the affected portion of the esophagus, and then re-attaching the stomach.  Of course, any surgery has its risks and this is no exception.  However, with this option, once the surgery is completed, there is no further treatment required.  He just has to recover!

The second option would be to shrink the tumor with radiation and low dose chemotherapy.  He would have to endure six weeks of radiation treatments five days a week, and chemotherapy one day a week for 5-6 weeks.  Once the tumor is reduced in size, the surgeon will proceed as in option number one.  These treatments would seriously weaken him, and I worry that he would be less able to withstand a long and complicated surgery. The radiation will most certainly affect his ability to eat, and the chemo will probably make him nauseated.  Obviously, this is a major concern I plan to discuss with the surgeon on Wednesday.

We continue to live as normally as possible.  Eating has become more difficult but, we are scouring the grocery store for soft foods, eggs, soup, pudding, ice cream, and V8 for vegetables.  We had to cancel our plans to go to Hawaii in June with our daughter and her family.  It was to have been a celebration of our 50th wedding anniversary.  It was a difficult decision, but we knew that neither of us would be really comfortable postponing treatment for this cancer, and with his limited ability to eat normal food, it just seemed to be the wrong time.

Thank you to all who are following us with your thoughts and prayers, and if you are so inclined, please pray for Option #1.

On March 20th, 2016, we were visiting our daughter and her family in San Mateo.  We decided to go out for lunch and while eating, Harvey appeared to be choking.  In fact, he was having trouble swallowing, but when he finally regurgitated the offending morsel, he felt so much better, and we didn’t think much more about it.  Almost exactly one month later, he was officiating at the Lincoln Rotary Club meeting, and (I was playing the piano), I noticed that he left the room a couple of times.  He probably would not have told me had I not asked him, that he was having the same problem of not being able to swallow.  The moment I got home that day, I made an appointment in the afternoon with our primary doctor.  Dr. Schneidewind proposed that it might be an esophageal spasm, but to be certain, he ordered an Upper GI Series.

On May 2nd, Harvey had the Upper GI with contrast and the blockage was discovered.  He was immediately referred to Dr. Jan at Sutter in Sacramento and on May 10th underwent an Endoscopic procedure.  Dr. Jan was very gentle in telling us that cancer that forms in the glandular cells of the esophagus is known as adenocarcinoma. This is the most common type of esophageal cancer.  He suggested that we see our oncologist.  I told him that we have been seeing Dr. Suhag throughout the study for melanoma and Dr. Jan seemed to know of Dr. Suhag because he said he would contact him and discuss the diagnosis.  On May 16th we had ann appointment with Dr. Suhag who actually telephoned us himself and moved the appointment up several hours.  He told us that this cancer was in no way related to the melanoma or the treatment Harvey received.  In fact, he said this was just ‘bad luck.’

In order to determine if the cancer has spread, Dr. Suhag ordered a PET scan which was immediately scheduled for May 20th.  At our follow-up appointment on May 23rd, we were given the good news that there was no other sign of cancer: no lymph nodes were affected.  In order to be on top of the prescribed treatment, Dr. Suhag put in a referral to Radiation Oncologist, Dr. Jones.  This morning, Dr. Jones’ office telephoned to set up an appointment at 12:30PM.  We also have an upcoming appointment on June 1st with Dr. Graves, the surgeon who will be the final voice in how we proceed.

This has been a week of medical visits, all with a positive ending.  On Monday, we had an appointment with the oncologist, Dr. Suhag.  He has been very attentive to Harvey’s condition and conscientious about blood work and follow up appointments.  During the visit, he kept looking at Harvey’s chart and saying “Wow!”  He acknowledges that Harvey has been through a lot and that it was a seriously life threatening period.  Results of the latest blood test show that he is still a little anemic, but the other blood levels are normal or very close to being in range.

On Tuesday, Harvey had an appointment with the cardiologist.  After his atrial fibrillation episode in the hospital, he was given amiodarone, a drug used to regulate the heartbeat.  We were uncertain whether or not we should renew the prescription because the cardiologist in the hospital had indicated this was likely a “one off” incident.  The cardiologist we met on Tuesday agreed and said that he should not stay on this drug any longer than necessary because it is very toxic to the skin, lungs, liver, kidneys, you name it.  He said that it would take about a month for the drug to leave his system, and we should be especially aware of his pulse rate should it go above 100 bpm.  According to him, Harvey will know if he is experiencing atrial fibrillation and should seek immediate medical attention.  I appreciated his candor in detailing possible outcomes.

Wednesday was truly a milestone for Harvey.  He had the port in his chest removed.  Believe it or not, it was almost a year to the day that he had the port placed.  It isn’t often that Harvey is willing (or able) to get out of bed before 7:00 AM, but on Wednesday, he was up and at ’em, ready to be at the hospital by 8:00 AM.  A very young, pretty, tiny surgeon, Dr. Cho, performed the procedure.  She was meticulous and chatted to us the entire time, even showing us the “used” port.  Harvey refused to take it home as a souvenir.

The home nurse visited us on Thursday morning and signed off on the pressure sores.  They are mostly healed now, though he will still have to be careful and not sit too long in one position.  It’s amazing how quickly these sores began to heal once he began eating and moving around.  The human body is marvelously resilient.

Next week we will celebrate our 47th wedding anniversary.  We are happy to close this chapter as we anticipate a new one in our marriage.  “For better or for worse…”

I have been reluctant to write over the past couple of weeks, fearing that if I said too many good things, I would jinx Harvey’s progress.  Confidently, I am happy to report that he is continuing to make good progress on many levels.  Blood tests taken at two week intervals have shown that all of his blood levels are returning to normal including white blood cells, platelets, potassium, and protein, although his red blood cell count and hemoglobin are still low enough to indicate he continues to be slightly anemic.  He is no longer taking any antibiotic and shows no sign of infection.  The pressure sores are healing nicely, and he is looking forward to being able to sit squarely in a chair rather than on one or the other butt cheek.  (TMI?)  The edema has disappeared, and, coupled with his weight loss, according to him he looks like an anorexic.  Since this whole ordeal began, he has lost over 60 pounds.  His weight in the morning is holding steady at about 165 pounds and increases to about 170 pounds in the evening.  The home physical therapist has signed off on Harvey saying that he has gained a good deal of strength and endurance over the past couple of weeks and his balance is so good that she doesn’t worry about him being at risk for falling.

Since he came home from the hospital, he has enjoyed the phone calls and visits from friends.  Last week he attended his first Rotary meeting in a couple of months and was deeply touched by the outpouring of affection from fellow Rotarians.  I am convinced that these acts of friendship and kindness have provided much of the impetus for his recovery, and I am deeply grateful to everyone who has been sending prayers and healing thoughts.

Harvey has been wanting to ease back into driving so earlier in the week, I asked him if he would pick me up at the green market by the Wave Fitness Center.  He agreed and said he would drive the golf cart.  I asked him if he had charged it since it has not been driven for several months.  He assured me that it was fine.  Can you guess where this is going?  He picked me up at the agreed time, and we headed home at a much slower pace than I remembered.  By the time we got to Kilaga Springs on Sun City, we were barely moving.  A woman walking along beside us asked if we were just enjoying the scenery.  I responded by saying that we hoped people would think that.  We did not make it home.  The next thing I know, Harvey suggests we get out and push.  We managed to get it around the corner onto Stag’s Leap before I said I really didn’t think this was a good idea for someone who nearly died and is still recovering.  At that point, he suggested we walk home and get the Chrysler and tow the golf cart.  After walking the short distance to the house, he got down on all fours to see how he could attach a tow rope.  It became clear that this was a bigger job than he could manage, so he called the golf cart maintenance people and had them come pick it up and give it its annual service.  I was grateful that he came to his senses.

He surprised me this afternoon by suggesting that we go to Starbucks and have a hot chocolate.  We have not done that for months, so I was happy to agree.  We ordered our drinks and when I went to the counter to pick mine up, I noticed the name on the cup was “ROF.”  I thought, the recalcitrant old fart is back!

On Tuesday when we were at Harvey’s primary care doctor’s office, I could not help but reflect on the differences between the doctor visits I remember with Dr. Rowntree in London, and the current visit. I remember how Dr. Rowntree would come round his desk with his arms akimbo, calling a greeting and moving to escort me into the room.  All the while, he would be asking open ended questions about family, traveling, work, school, the whole time eliciting information and encouraging a feeling of visiting a favorite “uncle.”  In other words, he got me talking.  Eventually, he would inquire about my health and what had brought me to his office on this particular day.  While I talked, he would make notes on a piece of quarto paper that had a hole punched in the corner, which would ultimately end up in my folder held together by a piece of colored yarn.  Occasionally, he would thumb through the pages, looking at notes from past visits, searching for patterns of behavior or complaint.  Then he would examine me, all the while chatting about his mother or a theatrical performance he had enjoyed.  Finally, he would make a diagnosis and, if necessary, prescribe a remedy.  He would always ask if there was anything else I might want to discuss, and then he would put his arm around me, tell me I was going to live to be one hundred, and escort me to the door.  I ALWAYS felt better when I left his office.

In complete contrast, the visit to Harvey’s doctor began with the usual vital signs check performed by a medical assistant.  We waited in an examination room, and when the doctor finally came in, he said “Hello.”  He did not use Harvey’s name.  He immediately sat down at the computer station and began typing.  It occurred to me later that he might have been entering notes from a previous patient.  After a few minutes of him typing and us staring at him typing, he said, “This is a hospital follow-up?”  That question only required a one word answer and that’s about as long as he waited before he began typing again.  “You must be about finished with the antibiotic!” he said.  I offered that it was a fifteen day course, so there were about seven days left.  I did not comment on the fact that he had prescribed it in the first place, but I did roll my eyes at Harvey.  More typing… Another five minutes passed and Harvey finally asked a couple of questions which were answered completely.  A brief examination followed and I had to remind the doctor to look at the pressure sores for which he had prescribed the antibiotic.  After a cursory look, the examination was finished.  We were dismissed, and he kept right on typing.  I have no clear idea what pressures doctors today endure, but I suspect they are significant, so I am trying not to be too critical.  But, if I had a choice, I would prefer to visit a doctor like my beloved Dr. Rowntree.

Harvey is continuing to improve gradually, gaining strength while the edema is diminishing.  The home nurses are very encouraging and friendly, aiding and approving our efforts to get him well again.  The physical therapist, Kristen, came on Monday and after an evaluation, she put Harvey through his paces, giving him new exercises for strength and balance.  I am very proud of how he has “gotten on board” and performs the exercises willingly and without complaint.  He has also enjoyed the visits from friends.  Not only do they make the day go faster, but he has less time to think about how he feels.  By the way, I decided to forego the diamond bracelet (for the time being) and went ahead and bought a countertop convection oven.  I am ever hopeful that a new kitchen appliance will inspire me to create enticing and delicious meals, at least long enough to get him well again.  We haven’t had popcorn for months!