karenulijohn

I am writing this as I sit in the ICU watching Harvey sleep.  Dawn just left and is on her way home to be with Cole for a special awards ceremony in which both will participate.  It is just past 1:30 PM and all is well.  We arrived at the hospital this morning at about 9:00 AM after finding ourselves dressed and ready to go at 7:15 AM.  Dawn doesn’t eat in the morning, but unlike her, I have to eat almost the minute I arise.  So, we stopped at Starbuck’s and I had an Original Oatmeal, and she had a grande coffee.

Harvey was wide awake when we walked into his room, and about the same time, his nurse, Melissa, came in to let us know that Dr. Graves was just down the hall and would be coming in soon.  What a stroke of luck to get to see him and hear what he had to say about Harvey’s progress.  He, and that cute Dr. Becker, looked Harvey over and asked him how he was feeling.  Harvey countered with “How do you think I’m doing?”  Dr. Graves said “You are doing phenomenally well.”  They bantered back and forth while Dr. Graves inspected all of the tubes and wounds, suggested removing one of the lines, and ordered the suction turned off for the nasogastric tube.  He then turned to the nurse and said “Get him out of bed and on his feet today!”  Wow, really?  In the end, she got him to swing his legs out of the bed, pivot to a chair and sit there for about 35 minutes.  She had pity on him when he fell asleep in the chair and returned him to the bed.  That really tired the big guy out!  When he got back into bed, he looked up at the monitor and commented that his blood pressure made him look like he was in hibernation.  At that moment she was asking him to “roll over please.”  Even at the best of times, Harvey’s hearing is not the greatest, but he thought she said she was “looking for fleas.”  We all had a good laugh over that.

By the way, Nurse Melissa was born and raised in Lincoln, CA.  Her father owned a chicken farm (maybe turkey) and she attended Lincoln High School.  A true Lincoln High Zebra.  She knows Kris Wyatt and Elizabeth Jansen, and a few other long time Lincoln residents.  She is a lovely woman, and a wonderful, caring nurse.  Last night before she went off shift, she introduced us to Nurse Chelsea who would be looking after Harvey overnight.  She was very attentive, but I told her that he can be overly stoic sometimes and not say anything when he is cold or in pain.  She went straight to the bed, leaned in, looked Harvey in the eye and told him she wanted him to be her most whiny patient ever.  She rattled off a litany of reasons why he might call on her including if he was cold, awake, in pain, not in pain, lonesome, etc.  Another “Angel of Mercy.”

My plan for updates did not work out.  Easiest way to keep up to date is to go to karenulijohn.com and click on the blog entitled “Surgery Day Diary.”  I am posting regular updates to that same blog, but automatic notifications are not going out to let you know.

8:45 PM:  It has been a long day, and Dawn and I are now resting at the hotel for the rest of the night.  Harvey was moved into the ICU around 4:00 PM by which time we had left the hospital to find a good place to eat dinner.  We walked across Capitol Park to K Street and found Ella, a very popular restaurant.  We arrived at about 4:30 PM and they do not start serving dinner until 5:30 PM.  However, they have a very well attended Happy Hour.  Dawn introduced me to Poke which is a raw yellowtail tuna in a spicy ginger sauce, served with tarot wonton crisps.  We also ordered lamb meatballs and a small caesar salad.  It was such a lovely afternoon that we ate outdoors.  A delicious meal.  After dinner, we returned to the hospital and found Harvey in the fourth floor ICU.  The room is “Huge” and Harvey, ever the comedian, asked if there was a bathroom, sauna or a hot tub.  We thought maybe he was a little over medicated, but he then went on to say, the room was so big, “there should be some other amenities.”  He has about 10 tubes sprouting from his poor body and he is uncomfortable to say the least.  But he is surprisingly alert and mobile.  He moves around in the bed pretty well, but he is receiving strong pain maintenance.  We stayed for about an hour and half, and were able to observe the nurses as they checked his wounds.  He is pretty beat up, but the incisions don’t appear to be as big as I had anticipated.  We will return to the hospital tomorrow morning to visit before Dawn heads back home to San Mateo.  I will continue to update you on Harvey’s condition.  Thank you all for your comments, prayers and well wishes.  We have felt your love throughout this whole ordeal, and we are so very grateful.

2:05 PM:  I just visited with Harvey in the Recovery Room.  He is still groggy, but coherent, and very glad to see me.  They would only allow us go to in one at a time, so Dawn is with him now.  He was very happy to see me and told me that he did not think he could go through this again.  He is in some pain despite the epidural, probably a level 3-5.  When the nurse said that she would give him a little bit of extra pain medication, he said his level was really 7-8.  They are trying to get him moved into ICU and they do have a bed, but nursing staff is at a premium.  It will probably be another hour or so before they move him.

12:57 PM:  Harvey is out of surgery and in the Recovery Room, awake and talking!  Dr. Graves and Dr. Becker came to see us in the waiting room and moved us to a small conference room where Dr. Graves told us that Harvey did very well.  They had hoped to perform the excision through the incision in his chest, but the tumor was still fairly large and he had to go higher than anticipated.  This required a second incision on his right side between the ribs.  There they were able to remove the affected portion of the esophagus and all of the surrounding lymph nodes, and reattached the esophagus and stomach.  Pathology will take approximately seven days, so don’t stop praying.  He has a lot of tubes including chest tube, bladder catheter, nasogastric tube, a drain and the epidural catheter.  He will undoubtedly be very uncomfortable until all of these tubes can be removed, but that will be when it will be.  He will be in Recovery for another hour or so.  We are going to take a break and go to the cafeteria for an appetite killer before we return to see him.

12:00 PM:  We are still waiting and the color code is still showing “In Procedure.”  We are assuming that the 8:30 AM start was delayed.  More news to come as soon as we have something to share.

9:30 AM:  Harvey was wheeled into the operating room at approximately 8:30 AM.  We arrived at the hospital at 6:30 AM and were directed to Patient Registration.  We had to smile because over the past two days, we have had numerous “Pre-Registration” phone calls asking, essentially, the same questions that he was asked here at the hospital.  But, he did get a bracelet, a lovely deep blue one.  We were directed to a waiting room on the third floor, and he was immediately whisked away to the pre-op area.  Dawn arrived about 5 minutes later and we sat and waited to be called in after he was prepped and on the gurney.  We sat with him, trying to keep things light, but when it came time for him to be wheeled to the theatre, Dawn and I both noted that he looked frightened.  I am sure I triggered it, because I started to cry.  We asked God’s blessing, waved him off, and walked over to Starbucks.  At registration, I was given a card with an ID number and color coded instructions.  These coincide with what looks like an “Arrivals” board at the airport.  It identifies the patient by number and is color coded to let you know at what stage the patient is in the process.  Right now, Harvey is “In Procedure.”

While we waited in pre-op, Harvey’s nurse was named Karen.  I quipped that he would be able to remember that since he dated two Karens before he got to me.  He was then visited by Dr. Jim Becker, Dr. Graves’ assistant.  He was very cute and personable and, hopefully, an excellent up and coming surgeon.  Next came Dr. Kandra, the anesthesiologist.  It was her responsibility to let Harvey know what she was going to do and how she was going to do it.  Then she needed to tell him all of the risks of anesthesia and surgery.  Finally, she asked him if he knew what they were going to be doing to him today.  Of course, Harvey, always ready with a dry remark, said that he hoped they knew, but he thought they were going to “rip out” part of his esophagus and then sew him back together.  That put a smile on Dr. Kandra’s face, and she seemed to lighten up a little after that.  Dr. Graves made an appearance, telling Harvey that he was going to do very well, and then looked at Dawn and me and said that we need to make sure Harvey breathes very deeply and coughs regularly to keep his lungs clear.  According to him, Harvey is to keep a positive attitude throughout this whole process, including recovery, no matter what.  Finally, his OR nurse came in and made the final preparations to move him to the OR.

I will update this post when Harvey is out of surgery and we have spoken to Dr. Graves around 11:30 AM.

Yesterday morning, Dr. Graves’ office called to inform us of the date for Harvey’s surgery.  He will be required to check in at Sutter Medical Center Sacramento,  Thursday, October 20, 2016.  While it will mean an early morning for us to get there on time, I am glad that he will be one of the first surgeries of the day.  Our daughter, Dawn, will meet us and stay with me overnight so that we can visit Harvey together on Friday.  While no one necessarily volunteers for this type of surgery, Harvey said that he is relieved to have a date for the final stage of his treatment.

As we continue to live day to day, we are looking forward to Sunday when our daughter and grandson, Cole come for a visit.  We always enjoy their visits because we laugh and reminisce and share and generally enjoy each other’s company.  Cole has a particular fondness for Waffle Barn, so we will likely give him the chance to eat their entire menu at lunch.

I will write again after the surgery to apprise readers of Harvey’s condition, and endeavor to give regular updates.  Thank you all for your interest, your thoughts and prayers.

As most of you know, today was Harvey’s scheduled appointment with the surgeon, Dr. Graves, in Sacramento at 10:00 AM.  We left the house this morning at 8:00 AM in anticipation of rush hour traffic and the hassles of finding a suitable parking space.  Needless to say, we arrived at our destination 45 minutes later and had an hour and a quarter to kill.  Oh well, it gave us a chance to walk to Starbucks and enjoy a drink and a pastry.

We walked back to Dr. Graves office and were seen right away.  The first thing he said as he walked in the door was “Your PET scan was excellent; you are free of any cancer! You are the perfect candidate for being cured because you have responded so well to the treatment.  Now, let’s schedule your surgery!”  He then asked when Harvey’s last radiation treatment was and said that he makes a calculation based on that date to determine the optimum time to perform the surgery.  It turns out to be in the week of October 17th.  He would have done it next week, but he is out of town.  The actual date is yet to be scheduled, but we should know in a couple of days.  He told Harvey that his assignment between now and then is to get into the best physical shape that he can which means walking and building muscle with some weight training.  The better his physiological health and cardio-pulmonary health are, the better he will tolerate the surgery.

Dr. Graves will make an incision from the breast bone to the stomach, and, ideally work below the diaphragm and behind the beating heart.  He will excise the portion of the esophagus where the remnants of the tumor lie and all of the surrounding lymph nodes.  He will then reattach the stomach to the esophagus, a procedure known as Anastomosis.  The surgery itself will take three and a half hours, five hours including the anesthetic.   He will have an epidural pain catheter for three to five days and a tube in the nose called a nasogastric tube for nutritional support.  The tube will be removed after they give him a drink similar to barium and see that there is no Anastomotic leak, after which they will start him on a liquid diet.  Harvey will have to remain in the hospital for seven to nine days, the first two days of which will be in ICU.  Dr. Graves said that Harvey will experience good days and bad over the following several weeks, but by Christmas, he expects him to be living a healthy and full life.

This is a lot of information for anyone to digest in one morning, but we also realize that this is really the only option.  The Lord has been watching over us, and will continue to do so, I know.

The test results from Harvey’s PET scan on Monday arrived in our online health information site, and after reading around the “medical speak” we were very encouraged by the outcome.  Bottom line, there is no visible cancer in the area of the tumor, however, the writer cautions that because of “inflammation associated with recent radiotherapy, residual malignancy may also be present” and advises that follow up imaging might be appropriate.  A few other things were noted that had not been seen on previous scans, most notably a spinal stress fracture in the area of the radiation treatment.  This may have been caused when Harvey fainted with the A-fib episode.  He complained of back pain, but we attributed it to the Neupogen.  The summary also refers to shadowy areas in the lower right lung, but again, it is most likely inflammation from the radiation.  All of our conclusions were confirmed by Dr. Suhag when we saw him on Wednesday.  He was very pleased with the results of the treatment.  When Harvey asked if this means he still has to see the surgeon, Dr. Suhag looked somewhat startled and then answered in the affirmative.  Harvey followed up with “What if I don’t have the surgery?”  Dr. Suhag dissembled a bit, saying “You really need to talk to the surgeon about that.”  Then, he tipped his head to one side and apologetically said, “It may come back, and you cannot have any more radiation and, further, chemotherapy will eventually stop working.”  All will be revealed, I hope, on Monday when we visit Dr. Graves, the surgeon.  I will try to give a more comprehensive report after we meet with him.

Harvey has continued to gain strength and stamina over the past couple of weeks, and his appetite is returning apace.  His sister, Hilma, from Spokane and niece, Lynda, from Kennewick came to visit with us for a few days this past week.  It was lovely to see them and gave Harvey a reason to “perk up.”  We drove them around Lincoln and Lincoln Hills on Tuesday and then had lunch at Beermann’s Brewery where Harvey tucked into a large slice of meatloaf.  We all enjoyed our meals and the service was very good.  If you haven’t tried Beermann’s since it reopened, you really should treat yourself.  On Wednesday, Harvey had a hankering for prime rib, so we arranged to have dinner on the patio at Meridians with our favorite waiter, Wallid, in attendance.  Good friends dropped by to join us for a drink and to meet Lynda and Hilma, whom Harvey refers to as his “much older sister.”  It was a perfect evening to be outside, and we sat and talked well past dark.  Thursday we took a driving tour around Sacramento and showed them the usual sites including the Capitol and Old Town.  We were so glad that they took the time to come to CA to visit, and we thoroughly enjoyed the time we spent together.

Our prayers have been answered.  Thank you all for keeping Harvey in your thoughts and prayers.  We are sincerely grateful.

It has been two weeks since my last entry, and Harvey is making slow but steady progress.  He had a followup visit with Dr. Suhag on August 30th when Harvey asked what the next phase would entail, and when would it start?  There will be a PET scan at the end of this month followed by another visit with Dr. Suhag to review the results.  We will then see Dr. Graves, the surgeon, to discuss the options for surgery.  For the month ahead, however, Harvey will be free of doctor and treatment visits.  His day to day recovery is minimal but, if viewed over the period of a week, the improvement is significant.

Yesterday, Harvey met with Dr. Y, the cardiologist.  After an EKG, Dr. Y. reported that Harvey’s heart rhythm had settled into a normal sinus rhythm and was holding steady.  His pulse, however, is very low, so Dr. Y. reduced Harvey’s daily medications by half in order to allow the heart rate to increase to an optimal level.  A resulting increase in pulse rate may make him feel more energetic.  I think he was encouraged by the Doctor’s visit because he enjoyed a visit with friends in the afternoon, and then went to the Merry Melanomsters’ meeting at the Infusion Taproom in the evening.

One of Harvey’s endearing qualities is his imprecise reporting of details involving numbers.  For example, when he was traveling for business, I would ask him what time his flight was arriving?  He would say, “Oh, around 9:00 PM.”  When I checked with the airline, the flight was actually scheduled to arrive at 9:55 PM.  I spent a lot of time waiting around airports until I finally caught on to this idiosyncrasy.  When Harvey was weighing in at Dr. Suhag’s office last week, I was stunned to see his weight registered 183 lbs fully dressed with shoes and wallet.  I blurted out “Have you been lying to me?”  He had been telling me his weight was about 190 lbs.  The following day, as I was hanging over the scale, he actually weighed 180 lbs, naked!  In another instance, he was on the phone with one of the pharmacists at Sutter who was following up on Harvey’s progress with the heart medications.  As I walked past, carrying some laundry, I heard him say that his pulse was ranging between 60 and 70 bpm.  I shook my finger at him and said “Tell him the truth!”  Before owning up, he asked the pharmacist if he was married and whether or not his wife nagged him?  While I was cackling in the background, he admitted that his pulse rate is actually between 45 and 55 bpm.  There is a definite pattern here!

With only a couple of weeks left of summer, I am looking forward to enjoying Fall, my favorite time of the year.  I was happy to begin choir practice at the church yesterday afternoon, and the ladies trio I sing with began rehearsing again last Thursday.  I continue with my workouts every day not only for the physical benefits, but the psychological and spiritual uplift I get from spending time with my friends.  We are so grateful for the support and love of our friends.

Yesterday Harvey became a Radiation Graduate.  His only disappointment was finding out there was no class picnic!  Over the eight weeks of treatment, we met and conversed with some very nice people.  He met other patients in the “robing room,” and I visited with other caregivers in the main waiting room.  One couple, also from Lincoln Hills, were “graduating” today.  In spite of the discomfort and fear that accompanies a cancer diagnosis, everyone seemed to be in good spirits and willing to share experiences and feelings.  To some extent, I will miss these interactions, and I will continue to pray for healing for these individuals.  Other than follow-up visits with his doctors, Harvey is hoping the medical establishment will leave him alone for six to eight weeks.

It has been a difficult week since Harvey came home from the hospital.  The first few days he may have overdone it a bit.  On Friday, we put in an appearance at a potluck with a group of good friends we have known since we arrived in Lincoln.  They were happy to see Harvey looking so well.  On Saturday, our daughter and family visited, and we had lunch at the Waffle Barn.  In the afternoon, the boys had naps, and the girls went shopping.  Sunday we attended church services, and of course, many people stopped to greet Harvey.  After church, we joined good friends for lunch at Red Robin.  By the afternoon, he was back in bed for the rest of the day.  His heart rate and blood pressure have remained stable, but the medications have upset his stomach somewhat.  So now, in addition to not having much appetite, we have to be careful that what he does eat doesn’t interfere with his colitis.  Weakness and exhaustion have kept him pretty close to the bed or recliner until Wednesday.  We had a lovely lunch after radiation, and he spent a great part of the day doing small jobs around the house.  It was a remarkable change.  However, the catchphrase “two steps forward, one step back” clearly applies here.

As a wife and caregiver, I see and hear more of the ups and downs than visitors, friends and family.  When friends call to talk to Harvey, you wouldn’t know there was anything wrong.  His voice is firm and strong, he laughs, answers questions directly, without hesitation, and his sense of humor is totally intact.  This is in sharp contrast to my experience of him sighing, groaning, collapsing on the bed, and not answering my questions or hearing my voice.  Maybe I should just give him a call!

After an approximately six hour delay, Harvey was finally, and officially released from the hospital yesterday.  Both Dr. Suhag and Dr. Y. checked him and agreed to the release, but the hospital doctor decided that Harvey should have one more blood draw to check his hemoglobin.  He wanted to reassure himself that the blood count was still on the right trajectory.  These events occurred around 9:00am.  The phlebotomist arrived at noon, and the report came back providing the result for hematocrit, not hemoglobin.  Another delay, another call to the lab, and finally, at 2:00pm, the nurse came in to remove all of the venipuncture needles and unhook him from the heart monitors.  I then helped him dress, and again we waited for the wheelchair transport to the main entrance of the hospital.  At 3:00pm, Lynnette, one of the Aides, came in with a wheelchair saying that we would likely be there until Thanksgiving if we waited for transport.  After stopping at Walgreens to pick up prescriptions, we arrived home at 3:50pm.  We, especially he, was overjoyed to be home.

Our happy day was slightly marred by a near “curtsy” event when Harvey asked me what we were going to have for dinner.  I listed some of the items that I had bought last week on the recommendation of my friend Debbie.  They were all nutritious, had lots of protein, and met the ease of eating requirement.  It was as if he hadn’t heard me, and then he said he would just have a can of chili.  All of a sudden, I could feel it happening.  I was losing control.  Weeks of anxiety, stress, worry, and uncertainty seemed to well up and, I broke.  He had hurt my feelings!  Did he even consider that I had to eat also?  I had tried so hard to find foods that we could both eat so that we could enjoy a meal together.  Of course, he immediately apologized and was truly contrite.  And of course, I forgave him, but it was difficult to get over the hurt.  I do appreciate that when one has been as ill as he has been, that it is easy to become self-absorbed.  This is not Harvey’s usual MO, thank goodness!

In the evening, our potluck group was meeting not far away, so we drove over for a short visit.  It was good to see everyone, and they were happy to see Harvey looking so well.  I made him wear his pink shirt so that his color would reflect the color in the shirt.  I know he enjoyed the outing.

Our daughter, Dawn and her family are on their way here right now.  We are so looking forward to seeing them.  I have separated myself from the issue of lunch and placed that obligation fully on my daughter’s shoulders.  Not fair, perhaps, but a relief for me.

Tuesday afternoon, Harvey’s condition took a distinct negative turn.  He was barely able to sit up, his color was all but non-existent, pale to the point of being gray, and his breathing seemed shallow and fast.  His heart rate was registering between 110bpm and 130bpm and his blood pressure was as low as 80/53.  There was some talk of giving him two units of blood by transfusion, but no decision had been made.  All of a sudden, there was a lot of activity in his room, and I found myself being afraid to stay and afraid to leave.  I didn’t want to be in the way while the nurses were taking care of him,  but, I think my imagination kicked in and, not to be too dramatic, I was afraid that I might not see him alive again.  I knew he didn’t want me to be there and see him in this condition, so I chose to leave.  I was really shaken.  As I got in the car, I put in a call to my daughter.  She answered immediately, despite being in a meeting.  She managed to ‘talk me down’ and convinced me that her Dad was in good hands, and that I had done the right thing to let the professionals do their work.  By the time I got home, I was in a much better frame of mind.  Our daughter has a lot of her Dad’s sensitivity and sensibility.  I am lucky to have both of them.

Later that evening, Harvey telephoned me to say that Dr. Y, the cardiologist, was on the case and had ordered the blood transfusion.  He said that Harvey’s red blood cell count was too low, and that treating the heart condition alone was not as efficient as treating the whole body.  Harvey’s anemia was interfering with the efficacy of the drugs.  The transfusion took about six hours and was completed overnight.

When I arrived at the hospital on Wednesday morning at 11:00am, the change in how he looked was startling.  His color was normal and all of his vitals seemed to be stabilized.  He was joking and smiling, and I could hardly believe my eyes.  He told me that he had eaten most of his breakfast, and finished most of the Jamba Juice protein shake that had been recommended.  I stayed for a couple of hours and then went to get some lunch.  Upon my return, Dr. Y was in the room telling Harvey that he was switching him to oral medications so that he could begin to get up and move around.  His heart rate and blood pressure, while still not at optimum levels, were stable enough to do away with the “drips.”  If everything remains as it is, he will be allowed to shower on Thursday.  I know he will welcome that activity.  Dr. Y would not speculate on a date for Harvey’s release, but he seemed confident that it would not be too long.

Our daughter and her family are coming here on Saturday.  Wouldn’t it be wonderful if Harvey could be home by then?