karenulijohn

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?

By this evening, it will have been three days since Harvey was admitted to the hospital suffering from Atrial Fibrillation.  Dr. Go, the cardiologist warned us that, with a compromising illness like cancer, Afib can be “pesky,” and that is turning out to be so.  Dr. Suhag was in this morning and assured Harvey that there are a lot of drugs available to treat this condition, and they just need to find the right combination.  At the moment, they are giving him Digoxin which may take up to 72 hours to work.  This is not what Harvey wanted to hear.

Dr. Singh is the hospital doctor responsible for Harvey’s treatment.  He is a lovely, young, Indian man with a caring and empathic bedside manner.  When first Dr. Singh came into the room, Harvey assaulted him with the most pressing question on his mind which was “When can I go home?”  Dr. Singh pulled the chair close to the side of the bed, reached over and took Harvey’s hand in both of his, leaned in and said softly, “We want you to got home well.”  He went on to remind him that they did not want to send him home before he was ready and then have to re-admit him.  Dr. Singh sat with him in this manner for a good five minutes or more.  Sadly, Dr. Singh informed us this afternoon that he will be working in a different location for the next few weeks, and that Harvey would have a new doctor looking after him tomorrow.  No one is even hinting about a discharge date at this time.  This morning, when I arrived, Harvey informed me that he was very grumpy, which translated means depressed.  He had hoped that all of his numbers would be normal, but unfortunately, that is not the case.  In addition, the drugs they are giving him add to his fatigue.  We continue to pray that his heart rate comes down and his blood pressure normalizes and stabilizes.

The Merry Melanomsters were devising a plan to come to the hospital last night en masse before heading to their favorite watering hole, The Infusion Taproom.  Fortunately, clearer heads prevailed, and they decided to telephone instead.  All of the melanomsters have served in the military, and somehow they each have a designated rank within the club.  Harvey is referred to as the CO, and while I know that normally means Commanding Officer, with these fellows, I am not so sure!  They might be better off to call him by his own given nickname of ROF (Recalcitrant Old Fart).

So many wonderful friends have visited him in the last few days.  Cards, emails, eCards, and Comments are prolific.  They really do make us smile and lift our spirits. We are grateful that we live in a community with such loving and caring people.  Difficult times like these really do reveal loving hearts.

What a day!  I came home from my workout yesterday morning, and Harvey had been out of bed a couple of times to brush his teeth and shave.  He was waiting for me so that he could shower.  I’m so glad that he did because, as I was enjoying my blueberry yogurt, I heard a loud crash in the bathroom.  I ran toward the noise and discovered that Harvey had fallen against the bathroom door.  He was conscious when I got there, but he said that he did not remember falling and hitting the deck.  He managed to  crawl back to the bed and was quite content to lay there and rest.  I took his blood pressure, pulse, and temperature, and only his pulse was a little high, registering at 116 bpm.  Within five minutes, I repeated the procedure, and his pulse had settled down to 68 bpm.  He decided to try again for a shower.  I braced myself in front of him as he stood up, and sure enough, he fainted again.  I managed to push him back onto the bed so that he did not fall to the floor.  I then forbade him to get out of bed for anything until I had spoken to the on-call doctor.  When I finally spoke to the doctor, he suggested I call 911 and get Harvey to the ER.  Harvey told me that he would go to the ER, but under no circumstances was I to call 911 because he did not want the ambulance, fire engine, hook and ladder, and forestry service to turn up at our front door.  I was not happy about getting him to the car and driving to Roseville, but we did it without incident.

Once we were checked in and triaged, we waited in the waiting room for approximately four hours.  When we finally got into the ER clinic, Dr. Ouligian arrived to take more details.  He then told us that Harvey’s heart rate was out of control, beating close to 170 bpm.  This is commonly known as Atrial Fibrillation.  He had experienced this once before when he was in the middle of treatment for Melanoma.  Lynda and Tara, both RN’s, started an IV with saline hydration and a drug called Diltiazem, to slow his heart rate.  The only tricky part with this drug is that it also lowers blood pressure.  Harvey was also seen by Dr. Najmabadi who, incidentally, took care of us when we first moved to Lincoln.  She was serving as the hospitalist for the day, and took no time in determining that Harvey would be admitted.  That was not what Harvey had wanted to hear.  He cried.  I cried.  But, we know that he is where he needs to be.

It wasn’t long before they had gotten him a room, and he was transported to room 185.  There we were met by Erin, his nurse and Vera, the nurse’s aide.  They got him settled and not long after that, Dr. Go, the on call cardiologist made an appearance.  Erin was surprised because it was well past 6:00pm at this point, and she told us that the doctors go home around 5:00pm.  Dr. Go is in the same practice with Dr. Y who treated Harvey three years ago.  At the outset, he told us that he has never heard of anyone dying from A-Fib.  That was a relief!  However, it can lead to stroke or congestive heart failure.  He said that A-Fib can be “pesky” for those with compromising health issues like cancer.  It can take some people four or five days before their heart rate and rhythm are within normal range.  That was another blow.  Harvey expected to be out of the hospital today.

I left the hospital around 7:00pm.  I hadn’t eaten anything since having my yogurt around 9:15am.  When I got home, I had some chicken salad and a couple of ice cream bars.  I felt like I deserved them.  Harvey called me around 9:00PM to say that he had some dinner and actually enjoyed it.  What does that say about my cooking which, when I offer to make something, he tells me he isn’t hungry and just can’t face food?

I guess the champagne toasts will have to wait for a few days!  Happy Anniversary, darling!

If it is true that white blood cells are manufactured while a person sleeps, then Harvey has been very industrious over the past week.  His white blood cell count went from 1.6K/ul to 8.8K/ul  in just one week after receiving the injection of Neulasta.  This result has not been realized without some discomfort.  His appetite has been non-existent, plus bone pain and overwhelming fatigue have kept him in bed for a majority of the day.  Any exertion resulted in a trip to the bedroom.   As of this writing, it has been one week since the injection and since his last chemotherapy infusion.  We are hoping that his appetite will improve as well as his energy levels with only five more radiation treatments remaining.

Daily trips to the hospital over the past eight weeks have become monotonous and tiresome.  Happily, members of the Merry Melanomsters have stepped up and offered to take Harvey on several days.  Not only does it give me a break, but it offers Harvey an opportunity to visit and converse with some of his drinking buddies.   It is interesting to note that I am at a loss as to what to do while he is gone.  Fortunately, I have some very good friends who have joined me for lunch or taken me shopping.  In fact, yesterday, a very good friend took me to Sam’s Club and then to Walmart for a wonderfully enjoyable morning.  We left at 8:00AM and returned around 11:00AM.  She enjoys baking and cooking far more than I do, and she was able to offer suggestions for food items with which to tempt Harvey, but that did not require superior skills in the kitchen.  I don’t even like to look at new cookbooks anymore because I seldom recognize all of the ingredients.  For example, I thought “pancetta” was a type of bread.  Imagine my surprise when I discovered it was nothing more than very expensive bacon fat.  (My apologies to those who understand the culinary qualities of pancetta).

Saturday, August 13th marks our 50th wedding anniversary.  It goes without saying that we will not be having a grand celebration at this time.  We may be able to have a glass of champagne and bar snacks on the Meridians Patio which would be more than enough.  However, we are planning a weekend at the Ritz Carlton in Half Moon Bay in September along with a Sunset Dinner with our daughter, son-in-law and grandchildren.  Given our situation, we are just grateful that we have had so many wonderful years together.  We can’t ask for more than that.

Harvey has officially graduated from Chemotherapy after his seventh and final treatment yesterday.  As an added bonus, the PICC line was also removed.  These milestones came on the heels of a very difficult week when Harvey experienced a lot of bone pain, overwhelming fatigue, and general weakness.  Despite the hydration scare of the previous week, and despite being told by doctors, nurses, technicians, and his wife that he needed to drink more water, he continued to under imbibe.  At one visit, the technician was unable to get a blood pressure reading because it was so low.  I finally reached the breaking point, becoming impatient with him over having to continually remind him to drink something.  After an expletive laden tirade on the subject, I ended my performance with a quick curtsy.  I don’t know where that came from, but it served to relieve the tension, and we had a good laugh.  Now, when I curtsy, Harvey knows I am not mad at him anymore.

Before the infusion yesterday, Dr. Suhag told Harvey that his white blood cell count was still very low, and that he was prescribing Neulastin.  Neulastin, similar to Neupogen, is a long lasting white blood cell booster that will work in his system for about two weeks.  This drug is likely to cause bone pain and fatigue.  Interestingly, the nurse who gave him the injection today told him to take a Claritin and a Tylenol to help minimize the pain.  We will see how that works.  Even though he is finished  with chemotherapy, Dr. Suhag is prescribing Neulastin prophylactically to boost his immunity, so that he does not succumb to an infection such as pneumonia or UTI.  He explained that a serious infection would necessitate a cessation of radiation therapy.  Starting radiation again would mean another round of chemotherapy.  Nobody wants that!

Late last week we met with Dr. Jones after Harvey’s radiation treatment.  Harvey asked him if he thought that the tumor had shrunk at all yet.  Dr. Jones explained that the radiation sterilizes the cancer cells and chemotherapy disrupts the cells’ ability to split.  The combination of two chemotherapy drugs works to damage cells at different stages of replication.  Over time, the cells can no longer reproduce and they die. The body disposes of the dead cells and the tumor shrinks.  This shrinking occurs weeks and even months after the treatment has ended.  So, we will have to wait to measure the success of the therapy.

We have weathered many storms in our lives together, and with God’s help and the good wishes and prayers of our friends and family, we will weather this storm as well.