Thursday, February 28, 2019

Good news:  Mike’s completely off the TPN, the intravenous food supplement, and completely on something which is more like real food and goes directly into his small intestines.

During dialysis today, they got out 2.7 liters.  This is really good. They usually only get  1 l. to 2 max.

Bad news: The doctor said that the chance of Mike surviving is slim at best. Mike still looks and feels like he has given up and wants to let go.  

He continues to need vasopressors to up his blood pressure during dialysis.  His pulse went high while in dialysis.  Not a good sign about his response to life saving measures.

            When I went back to the cabin last night around 8, I nearly tripped over a raise piece of cement on the walk.  That I was able to catch myself on the way down is amazing. Thank God. The first thing I did was open that hot/cold pack, put it in the micro wave, and lay down on the bed to apply the pack to my back.  I woke up at 12 midnight. I did some before bedtime prep work, like plug in my computer and my phone. Then I went back to bed.

            I woke up this morning close to 9 am feeling surprisingly better.  Apparently, the hot pack and the Ibuprofen did the job, My back’s not 100%, but much it’s better.  - or maybe it was coming to terms with Mike not wanting to live – if that is really the case.  Who knows?  I’m just doing the best I can, listening to the peaceful voice in myself. 

            My phone had binged as I lay in bed. When I finally got up to check, it was from Yvette. She said she had decided to come over. She would be staying overnight.  She was catching a 9:45 am flight. I got to the hospital before she did. When I texted her to see where she was, and told her I would be waiting her on the 5^th floor by the elevators.  I didn’t want her going directly in the room.  The dialysis nurse would be disconnecting Mike, and at that point everyone has to be suited and masked or out of the room. She was still waiting for the free shuttle to the hospital. 

            When I texted her again asking where she was, she told me that she had already been waiting for 45 minutes.  I went down to the first floor and located a shuttle schedule.  She must just have missed the 11 am departure. The next one was at 12:30.  I told her to take a cab.  

            I was waiting for her at the front of the hospital by that point. I saw the cab arrive and greeted her.  I had left my wallet upstairs, so she had to pay. I will pay her back.  The first thing she said was that she knew our relationship wasn’t perfect, but she felt she had to be at the hospital to affirm her commitment to me.  I am so lucky.  The kinks in our relationship can be worked out over time because we both want to do that. No worries.

            I call Yvette my goddaughter, but she is really only my Hanai goddaughter. I’ve known her since she was 31 days old when she moved into an urban commune in Brooklyn along with her parents. Her family moved out after two years, but I had a close relationship with her mother, and so my relationship with Yvette continued.  Yvette and I both feel that we bonded almost right from the beginning. 

            Yvette’s birth parents were both dead by the time she was 11. Her maternal grandmother asked Mike and me first if we would take her and her younger brother. We, of course, said yes. Then her maternal uncle, who was living in the Philippines at the time with the military, jumped on a plane and came to get the kids.  Since her uncle and aunt were available, their grandmother took that option.  Fortunately, their aunt/adoptive mother continued to include me in the kids’ lives.  Again, very lucky.

            When she and her family came to visit us from their home in Texas several years later, when Yvette was 14, she said something remarkable to me.  It was just the two of us watching a PBS documentary about grandkids helping to take care of their grandfather who had dementia.  He had slowly been declining. It finally came to a point where he was incontinent. The grandkids were asking if  this was the point at which they should put him in a nursing home.  A granddaughter-in-law said, while holding her 8-month-old baby, “If I can change my baby’s diapers, I can change his.” Yvette looked at me and said, “I’d do that for you.” Wow!  

            The next  year when she came to visit, I reminded her of what she said, assuring her, “I in no way expect  you to carry through on your promise.  I just want you to know how much it meant to me that you would even say such a thing to me.” According to her, that was the  year she did make a commitment to take care of me, and Mike, in our old age.  She has never backed down from that promise she really made to herself.   She actually said to me at one point,” I hope you made it clear that I’m the one who will take care of you to Damon.  I don’t want to have to arm wrestle with him over it.”

            And where is Yvette now in this plan?  In 2010, Mike and I bought a house in Kailua Kona, Hawaii with Yvette and her husband.  In 2014, Mike and I finally retired and moved here. Mike and I have had busy, fulfilling lives here while living here. Josh and Yvette have built their own lives.  We are separate but gently overlapped.  Things were a little rough in the beginning, but they have been slowly and steadily improving. Everyone is committed to working it out; we each work to respect each other’s point of view. 

            After Yvette arrived at the hospital, we went upstairs to the hospital cafeteria. I originally only wanted an orange juice, but once there, realized I was hungry and wanted a full lunch.  The lunchroom was crowded and we had trouble finding a free table. One became available that had a view of the valley and mountains.  

            After lunch we went to Mike’s room. Yvette, who is a certified massage therapist, got to work gently on his body.  Because he was arranged leaning pretty far to the left of the bed, I could reach his forehead easily and plant some kisses.  We both could feel him relax as we were delivering our own kind of loving.  I could feel Mike’s energy again.  I don’t know if he is saying he wants to live, or if he took my word for it and accepts that I am just offering him comfort while he is still with us.  Either way, he is allowing me to connect with him energetically again. Whenever we make physical contact, there is this amazing, loving, healing exchange of energy. It was there from the beginning, the day we first hugged in our group therapy meetings.

            When I first experienced this exchange with him,  I thought, “Damn, here’s another man who is going to interpret this exchange as purely sexual.”  While it can be transformed into sexual energy, that’s not what it is. Mike was the first man to recognize that. He told me that he saw me as someone who would take care of herself, and be able to be concerned about others as well.  It’s the way I wanted to be seen; and, clearly the person I wanted to be.  Mike has helped me to become more of that person that I always wanted to be.

            I told him again that he is free to make either choice, to fight for life or surrender to death.  I would be good either way. However, between what the doctor has to say and what I’m experiencing from Mike, I am feeling strongly that he wants to and will die.   I am looking at releasing him sometime early next week.  I am hoping to be able to lie by his side as he goes.

            However, I would like them to try to get him to breathe on his own again.  This requires reducing the sedating Propofol. I would love to be able to communicate with him in a more concrete way than my psychic perception to find out what he wants. 

            Bryan, who lives on our property, texted Yvette to say he was at the hospital.  Yep, two of the 5 people on our property will be in the hospital as patients tomorrow, and two more, Yvette and me, as visitors. B is having major surgery in a clear cell tumor, also called a sugar tumor. It is cancerous and very slow growing, and rare.  He  will have surgery through his back, moving his ribs around in some horrible way. After the surgery, he will be in the ICU on the 4^th floor, if they have room down there.  If not, he will be here in the 5^th floor ICU on the same floor as Mike.  

            I spent some time today telling Mike that whatever he had done in this world, it was enough. He was enough. I could feel him relax.  He works hard to be a good and giving person. I don’t think he appreciates how successful he has been on his mission. His problem is accepting the love, and the praise, that other people want to give him. If he does make it back to life, I hope this is one of the things that will have changed about him.  I hope he learns he doesn’t have to earn anyone’s love; he just has to accept it. Or, go to his death peacefully.

            As usual, I convert all my experiences into some philosophical concept.  This time my attention turned to the difference between an adult’s capacity to love versus a child’s. 

I think the difference is that a child’s love is all greed.  It’s all self-centered, but innocently so.  It is so attractive in a young child.  What a loss when they become self-conscious and can no longer accept all the love we have to give them, but require us to stand back, or they become annoyingly demanding, and we feel we need to push them away.  

            An adult, however,  is expected to be able to think of others.  If they can’t, that becomes a pretty unattractive, unpleasant person. But, we still enjoy hearing about people who are outrageously for themselves.  They are wonderful people to watch- from a distance, not such nice people to be around.  As an adult, we have to do everything not just for ourselves but also for what is best for those around us, not just for their sakes or for the sake of being a good person, but for our own sakes. My sense of well-being in linked to the well-being of others. I don’t live in a vacuum. It is the only way to live fully.  I doubt we can be perfect at fulfilling these objectives. We just have to take our best shot, hope for the best, and accept that we sometimes do damage to others. Death, disappointment and  hurting others are the inevitable. ( I do believe there are people who avoid taxes.)  Really living, joy, satisfaction, even gratitude, and doing things that truly benefit others are experiences which are not guaranteed in life. Those we have to work for.

            While there are some adults who only think of themselves, there are others who pride themselves of always putting others before themselves. We always have to think of ourselves.  If we deny that we do, we are merely using people to satisfy our own needs to be needed to be useful, or to prove we are good people. I think that is also a huge mistake, as much as it is for those who only think of themselves and say the hell with others.  These people cannot see others clearly because they don’t see themselves clearly. They are unhealthfully merged. 

            I have a funny story that illustrates how damaging that can be.  Many years ago, I joined a group of people through the Quakers (Society of Friends) who were organizing a commune, (where I met Yvette and her parents).  I had to attend a meeting to be accepted by the group.  It wound up being a special meeting to evaluate if they wanted one of the early members to be expelled.  He was not in attendance.  I remember one member, Art Clymer, saying the following, “I don’t want to be asleep or at work and have to worry about what Carl is doing for my good.”  I think Carl represented an extreme case of focusing too much on what’s best of others.  That means he was overly ego involved in what he was doing. He never acknowledged his own selfishness that prompted his actions.

            I have told Mike that whatever he chooses to do, live or die, he must do it for God, for his own sake, my sake, the sake of our marriage, and the sake of the larger community he’s touched- in that order.  All those factors must be taken into consideration, and we have to put ourselves first, right after God. If it’s otherwise, something will be terribly wrong.  Not that there is any one way to get it right.  I just know the difference between calm knowing and anxious doing.  While I am often guilty of the latter, I much prefer the former.

            Yvette and I left the hospital, and headed back to the ashram a little later than I had wanted to.  B was at the hospital visiting Mike too , and we were all having a good time together.  I had wanted to do the laundry while we were having dinner, but we had to be there earlier to pull that off.  

            Shortly after we entered the dining room, Hari, from Bulgaria, and Jamie, a born and bred Hawaiian, entered to have their dinner.  Jamie is the one who brought me flowers one day. Hari is somewhat more standoffish. He is just visiting and  will be going back home to Bulgaria sometime next month.   Jamie announced that they would be coming to the Big Island sometime in March so Hari could see it before he left.  I proposed that they can stay at our house.  Hari was somewhat appalled.  Jamie commented Hari wasn’t used to the aloha spirit of Hawaii yet.  Yvette, who was sitting right next to me, made sure they had her number so they could being touch with her when they were planning to come. She got the same vibes off them I did.

            It was too late to do a laundry. The folks say no laundry after 8 pm. The machines are right by some of the sleeping quarters for the members of the ashram. They get up at 3:30am; they go to bed early.

            Yvette and I went back to the cabin. Yvette got her first peek of the huge banyan tree by moonlight. Yvette gave me a massage to help my back.  Problem is when my back muscles get stimulated, their first response is to get more painful.  I was all prepared for bed so all I had to do was get in it. Not an easy feat when I have back pain.  I managed it. Yvette heated up the hot pack in the microwave, helped me put it in place. Right before I fell asleep, I told Yvette that I wished she was staying longer. Her plan was to go home Friday night. She said she love to and she’d change her plans to stay for the weekend.  We’ll see how it goes after that. 

Wednesday, February 27,2019

Good news: His blood pressure was a little higher, stayed higher longer, and never dipped too low, so they actually had to stop the dialysis. This was accomplished on only a little bit of medication. His white cell blood count came down from 35 yesterday to 28 this morning.

Bad news: The BUN, blood urea, and nitrogen count are high. Therefore, Mike is going to receive dialysis 6 days a week instead of just 3. O.W.! But hopefully, it helps.

He has a rash along the sides of the body, which the nurse just discovered today. It may be a reaction to some medication, or it may be stress-related.  Good God, is there any other form of torture available that has still been left off the table, and we can look forward to.

He didn’t respond to commands like, squeeze my hand, thumbs up, wiggle your toes and open your eyes after being off the sedative for an hour.

    Boy, I had a lousy night’s sleep last night. I felt like I just dozed the night away instead of sleeping deeply.  I was worried about Mike.  I am usually able to set aside my thoughts about him, but not then. I’m worried that he has given up. He feels more distant to me. Of course, there can be a possible interpretation. I believe Mike is more emotionally dependent on me than I am on him.  This means, if he dies, I think I will build a new life, but if I died before him, I think he would fade pretty quickly. This may be a pattern among men in general.  Me and my big mouth.  Hopefully, I won’t have to find out.  There is no question that I will miss him beyond words.  We have been so good to and for each other. Most days have been a pleasure.  Now, this does not mean we haven’t had fights, nor does it mean that there have been bad days, even bad years when we were distant from each other. 

    The question now is why do I feel he is at a greater distance than usual. I can think of two reasons: the first is he is working on dying; the second is that he is finding his spiritual center and connecting more to God and needing me less but can still go on with life.

    I think he experienced a change like that when he lived in D.C. while he got his Ph.D. and I stayed in Princeton.  He left on Sundays and came home again on Thursdays during the semester. He learned that he could be fine without me.  That was good, but we had to renegotiate our marriage.  Finally, it worked out.  If we go through a phase like that again, I will slam us into therapy pretty quickly.  I don’t need him to be dependent on me, but I do need him to enjoy loving me and enjoy being loved by me.  I also need laughter, silliness, comfortable silence, and great hugs and kisses.

    Mike had 2hours of dialysis left when I came in.  He does 4 to 4 ½ hours each session.  The BUN ratio (blood, urea, nitrogen) is bad.  This basically means his blood is very dirty.  Usually, we can count on our kidneys to filter all that stuff out and send it down the correct shoot into the toilet.  But, Mike’s kidneys are no longer in operating condition.   

    The dialysis nurse today was Daphne. Lovely woman.  She was one of the people who helped me crawl into bed with Mike when he was having a dialysis session when he was on the second floor. While some of the dialysis nurses are cold and indifferent to the needs of the patient and family, Daphne is the exact opposite.  She also had pancreatitis.  She was much younger and had a much milder case; she was only in the hospital for 10 days.  However, she was pregnant at the time through IVF and lost the baby. She said there is some connections between IVF and pancreatitis. The pancreas seems to be a testy organ. 

    After the dialysis was over, the nurse dropped the Propofol dosage hoping Mike would wake up, and they could try another round of spontaneous breathing.  They were trying to get him off the breathing tube.  No significant response.  He could bang his hand, but that was it.  He couldn’t give a thumbs up and couldn’t nod his head yes, or shake his head no. His pulse went way up, indicating he was anxious, and the nurse put him back on the Propofol. Not a happy moment.

    One of the ICU doctors came in.  This guy missed the course on Bedside Manner 201.  He starts out stating abruptly, “ I’m sorry. Your husband isn’t improving.” I looked up, startled. “What does that mean?”  “Well, I was hoping he’d be off the ventilator by now.”  I still look a little confused. The good doctor, who may, in fact, be an excellent doctor, has no idea how to talk to people.  I suspect from his affect, he may be on the autism spectrum. The poor guy actually said to me at one point, “I was trying to show understanding.” Ow!  I ran into this guy before.  I thought he was a control freak.  Now, I see he has other problems. I will remember to cut him more slack and try to remember not to freak out when he presents his information in this cold, abrupt way. I actually said to the nurse that I would cut him more slack next time because of what I suspect his problem was.  She smiled but said nothing else about him.  What she did say is that the ICU has been going crazy for the last week.  They have no more room, and the people who are coming up here are really, really sick. They are all intubated and on high doses of sedatives.  She said she has never seen it so crazy. Apparently, sometimes people come up here who are recovering from a stroke and need to be observed more carefully but are otherwise in good shape.

    At some point in the afternoon, I stepped outside Mike’s area to speak to his nurse.  “You’ve been working here for a while. Do you have a sense when people have given up?” She nodded in a way that made me know she was answering my question about Mike, not just a general question.  Between almost my walking out without saying my usual good-bye on Sunday or Monday night, my disturbed sleep on Tuesday night as I felt him slipping away from me energetically, and his inability to surface from the anesthesia so he could breathe on his own, I had the strong feeling that he had given up. 

    I went back to the room and spoke to him directly.  I told him I wanted what was best for him. If that was death, I was on board.  I reminded him of what I said when he went off at the age of 54 to start his second Ph.D. in Washington D.C. when we lived in Princeton.   I told him if he did his work for God, himself, me, and our marriage, in that order, we would be fine.  At first, he thought that was a totally bogus idea.  Fortunately, I said it in front of a friend who he was prepared to listen to.  She said, “Yes, she’s right!”  Mike and I both did fine for the 7 years he was away during the week studying, and our marriage survived that separation.  And, even more importantly, it created opportunities for Mike that made his life so much better, and as a result mine.  We both thrive on each other’s happiness.  Fortunately, envy is not big in our psychological lives.  If someone else is doing something that I think sounds good, it means that I can do it too if I really want to.  Of course, I have to put in the effort and stick-to-itiveness. 

    When I was through telling him he could go and I would be all right, he managed to tap his arm twice, forcing himself to surface through the maze of sedatives.  I took that to signal, “Thank you.”  As I see it, the more I assure him I will be all right, the more he let’s go.  I think the start of his release came when he overheard Damon and his wife, Cylin, talking among themselves about what an amazing job I was doing taking care of myself.  Once he had some assurance, I would be all right, he could relax.

    I also told Mike that I wanted to be by his side when he died.  I feel it is a significant moment in our marriage, something we should share.  In this case, very much like our marriage, it will be a mutual decision.  This will have to be a joint decision too because we will have to decide to take him off life-support and let him go. I reminded him I cried at our wedding, too. 

    I left at 6 today, a little earlier than I usually do. I stopped off at Long’s Drugs to pick up a hot/cold pack.  I got the one with those ‘peas’ in it, and some Ibuprofen, which Dorothy said might be better for my back problem.

    When I got to the ashram, I left my stuff in the car and went in to have dinner.  Lasagna night.  The food is delicious.

    I also found a woman who said I could call her if I ran into problems getting dressed in the morning. At first, she said she couldn’t because she had a lot of responsibilities in the morning.  Govinda had said something comparable when I asked him if there was someone I could call for help getting dressed if I needed to.  These responsibilities are to the deities.  They bathe them, dress them, feed them and decorate them with fresh flowers.  It sounds like a lovely daily activity. Such an opportunity to pour out love.  Maybe I’ll find something to do like that for once Mike is gone. I  need something to pour my love into, something that won’t find my attention intrusive.  Apparently, the woman was concerned that I would require an hour.  No, only five minutes to help me get my pants on.  I wasn’t able to reach them in the morning.  Fortunately, I had Dorothy to help me.  She told me to order a hip kit.  Must do that.

  

Tuesday, February 26, 2019

 Good news:  His coloring is good today.  He looked kind of pasty yesterday.

They have been withdrawing him from blood pressure medications, called vasopressors, to RAISE his blood pressure; he has been holding on.

No fever.   His vitals are pretty stable. There is a good possibility that the outright destruction of his pancreas has stopped.  

Bad news: They couldn't get him to breathe on his own.  He became too anxious.  This is not uncommon.  Nobody says, "Yay! Please, intubate me. "It's a pretty unpleasant feeling.

    This is the second day when there is an increase in his white blood cell count.  This suggests an infection somewhere in his system.  

   

     I mentioned the great meal Dorothy, and I had at the ashram, but I forgot to mention that I scraped the left bottom of the car on a set of low border defining rocks the way I scraped the bottom edge of the right side of the car. How fast was I going?  Very, very, very slowly.  It was dark. I couldn't see the rocks.  I missed the tree. That's pretty good

    Dorothy and I slept in the cabin together.  She took the single bed, and I continued in the double.  We both slept well.  I think I slept particularly well remembering Mike's telling me to cut the bibble-babble and smiling impishly when the men in the room laughed.  Never been happier to be told to shut up.

    Dorothy was delighted to be sleeping in the environment of the ashram for free instead of the fancy hotel that cost $250 a night because of some deal Damon finagled, and usually costs about $300 a night.  The 'room' is a  free-standing cabin with two beds, a bathroom, a small kitchenette, and a desk. This room includes free meals for Dorothy and me..  Dorothy was complaining that she had had an omelet every morning at the hotel.  At the ashram, she had delicious oatmeal, and some foods she had never had before.  They only cook Asian Indian food here, and they cook it well.

    Our first job was going to a UPS store to get rid of a brace of socks I bought from Amazon for Mike to keep his feet warm.  They didn't sell a single pair, I had to buy six.  The brace of six came to about 1 foot by 8 inches.  Really? All seemed a little overkill. The UPS was nearer to the hospital than to the ashram. You would think that there would be UPS stores all over Honolulu, but no.  When we found it, it was in a Navy PX. 

    I needed some code from Amazon to complete the mailing. Because my phone broke, and August placed my sim card in Mike's phone, I didn't have access to my email on the phone I was using.  The UPS store didn't have free Wi-Fi. Dorothy and I had to go to a food court in the PX to get the Amazon code to give to the UPS folks.  I took a shot of it on my phone, and we returned to the store.  It took all of two minutes once we had the necessary information.  Then off to the hospital, which was a mere 7 minutes away.   

    When we arrived at the hospital, the parking lot only had 3 spaces left. I let Dorothy out before I turned into the lot so she could go up and be with Mike.  Jean had already arrived.  She was going to spend the day there until she had to leave for the airport for her return flight home to the NJ.  I came around a bend to find a car just pulling out on the 4th level. I parked and went upstairs to join them.

    I knew already that they had tried to take Mike off the ventilator to get him breathing on his own in anticipation of extubating him, finally getting that tube out of his throat. But that didn't work.  He became too anxious. Not an uncommon reaction.  They put him back on support and increased the Fentanyl so he could be comfortable.

    I had called to make an appointment with a doctor in a clinic for myself today.  I have a bad back that hurts with any up/down motion, but other than that, it's only mildly annoying. I'm not sure if it is due to injured soft tissue, or if I've done something to one of my spinal disks.  Also, I have been running high blood pressure.

    I discovered the high blood pressure that last time the family came to Hawaii in response to Mike's first trip to the ICU.  Jean and I shared a room and she had a blood pressure gadget to monitor her own blood pressure.  I did mine on a lark and was rather appalled by the result. 160/95. I called my primary care physician in Kona immediately and asked her to prescribe medication.  She was able to order it so I could pick it up here in the hospital, since she is part of the Kaiser system. I started with one pill a day.  I also bought a blood pressure monitor for myself, and was observing that my blood pressure seemed to love those high numbers.  I contacted my doctor again, and she recommended that start on two pills a day.  The assumption is that I have higher blood pressure because of my current circumstances, and we can drop the medication once my life levels off.  But, my blood pressure is not responding to the medication. It's not going much higher, but it sure isn't coming down.  The doctor I saw today recommended that I increase the dosage again.  The clinic was only 7 minutes from the hospital, easy to get to. Although not understanding the parking lot, I wound up parking in the staff lot instead of the patient one.  

    I had made my appointment in the morning before I left the ashram. When I got to the hospital, they told me they would take him down for a CT scan. Scheduled around the same time as my doctor's appointment.  Perfect.  We would both be out around the same time.

    I thought I would have a long wait at the clinic, but there was no one waiting to see a doctor.  I was in and out pretty quickly.  The doctor tested my leg strength to get some idea of what was going on with my back.  I came out hunky-dory, strong legs.  I told her I wanted an X-ray to check there was no spinal damage, like a ruptured disk.  She ordered that.  I went down to get the X-ray. There was a lovely surprise in the X-ray area, a hand-painted wall with scenes from Hawaii. But, this wall didn't look like the usual art commissioned by Kaiser.  When I commented on it, the X-ray tech said he had painted it in his free time.  The wall would come down.  It was up to hide construction on the other side. 

     After an hour and a half, the technician also allowed me to see the X-rays. I'm not an expert,  at least not yet, but I didn't see anything that looked bad. That was a relief.  However, maybe there may be a nasty surprise in store.  The next step may be to get to a chiropractor, but I'm not sure. Don't want one that is just going to look at my spine and not my soft tissue.

    When I got back to the hospital, Jean had already caught the shuttle to the airport to catch her plane. We had said good-bye before I left, anticipating that I wouldn't be back in time. This just leaves Dorothy and me of the family group.  I will miss the company.  Not just for myself, but because I think Mike enjoys listening to our conversations. 

    Mike had a visitor today, Will from the diaconate program. He has apparently visited several times.  He was great company.  Dorothy, Will, and I had conversed about many things.  I believe Mike enjoys hearing conversations. Will's contributions were particularly interesting.  He was telling us that the Polynesians discovered every inhabitable island in the Pacific Ocean.  How in God's name did they do that?  Take a look at your map. The Hawaiian Islands are small dots in the middle of this great body of water. In retrospect, I don't think Will and Dorothy were standing close enough for Mike to hear them.  I think the people holding the conversation should be sitting on either side of Mike's bed so he could hear.  The nurses always deal with people as if they can hear, no matter what state they are in. They tell him what they are about to do. "I'm going to take some blood from your middle finger," while holding his targeted hand. "Now, you'll feel  a small prick."

    While Will and Dorothy were talking, the nurse allowed me to look at the results of the CAT scan Mike had. That's where I read the report that the pancreas may have done its worst. Mike's case is so severe, they calculated it would be a least three weeks before they could be even a possibility that the pancreas had done its worst, and the attack wouldn't kick back in and do more destruction. So, after 5 weeks, this is very good news. Even better, there seems to be some pancreas left. I'm not sure how much.

    I have had some conversations with Mike, I believe he has been saying he wants to die, but I'm not sure.  My response has been, "Not yet, not while there is a chance you can have a life after this disease." But I assure him that if there is no chance recovery, Damon and I are in complete agreement about letting him go.

    Some have asked if Mike really wants to die.  I don't know.  I do know that there have been times when I have been violently nauseous, I have wanted to die. Mike is clearly suffering.  He wants his suffering to end.  I can appreciate that he can't see an end to it at this point; it's gone on forever. If it weren't for our information from Tom, I doubt any of us in the family would be able to contemplate an end to it. How could a situation that has gone on so long get better?  This is a question we continue to ask. It's hard.

    Because I am concerned that Mike cannot envision a full recovery, and feels he would not want to live a half-life, I called someone who I thought would be an expert on end of life issues for the Catholic Church.  I had two questions: first, it is part of Catholic doctrine to allow someone to die by denying life support.  The answer is,  yes. You are not required to use extreme measures to save a life.  The second question was: if Mike survives and decides after one or two years that the life he is living is not worth it for him, can he refuse dialysis and allow himself to die from end-stage kidney disease.   The answer to this was also, yes.  I told this to Mike.  I am hoping it will give him the courage to face what he has to go through, which is a tremendous ordeal.  I have told him that he is truly suffering a misery.  However, tough noogies. I will not pull the plug; neither Damon nor I will pull the plug until it is clear that there is no more hope. Again, I thank God every day that I learned Vipassana meditation techniques.  It has taught me how to sit with the pain of others without suffering from sympathetic pain.  I could never do what I am doing if I didn't have this skill. Never. 

    Some people are writing that what I am doing is amazing.  I think that many of you would and will do something comparable in your lifetime, or already have. I hear stories from you taking care of family members that are ill, and I am amazed. Yvette's mother-in-law took care of her aging parents.  Her mother had Alzheimer's. I was a very difficult situation, but she always handled it with grace and compassion. I wanted her to write about her experiences so she could help others in a similar situation.  She didn't do that. I'm writing about mine, minute by minute. I am documenting what I'm going through.  And, the act of documenting it is making this whole process easier for me. That I have people out there reading it affords me some, I don't know what, satisfaction? distraction? comfort? pride? pleasure? All I can tell you is that it feels good that people are interested, learn from what I write and many are actually enjoying it.  It does a lot to  , , ,  I don't know what, but I do know that it makes this experience easier for me. Thank you.

    Dorothy and I left the hospital at the usual 6:30 pm, went to the ashram for dinner.  Dorothy was again enthralled with the food. She bought a cookbook. She asked people how they made certain dishes, what spices are included, etc.  Me, not so much.  I eat the food, enjoy it more with each passing day as my palate becomes more familiar with the tastes,- but cook it?  I don't think so. I don't cook.  Mike has been my cook all these years.  He loves to cook, and I love to wash dishes.  It is a match made in heaven.

Monday, February 25, 2019

Good news:  He is breathing on his own but while intubate in preparation for extubation. He is maintaining his breathing and a reasonable oxygen rate.

Bad news: No one is very optimistic about his surviving this hospitalization, or maybe we can say they're only very conservatively optimistic.

   

     I woke up before 8 but just lay in bed.  Sometime in the morning, the rain started.  I thought, "Oh, sh_t! I left my umbrella in the car. I'll be soaking wet by the time I get to the hospital, and it's freezing cold there." I decided to wear yesterday's clothes, except for underwear for my run to the car, and have a change of clothes in a shopping bag.  Then I could change when I got to the hospital.

    I left the ashram about 9:30am, planning to have breakfast at the hospital.  They have a darn good cafeteria food, and it's cheap, well inexpensive. I think some folks come here to eat that have nothing to do with the hospital.  There are two old men who I see regularly.  Good thinking.

    When I got to the parking lot, there were only 33 spaces left. I knew that meant that it would take time to find a parking space.   I usually go down to the 4th or 5th floor, but today I was part of a caravan of cars looking for a parking space.  The caravan came to a halt as someone pulled out of a parking space, and we all had to wait until the space was free and the car at the head of the line went in.

    When we got to the 5th floor, one of the attendants saw me coming, waved to me, and opened a held space. What's that about?  The attendants sit at a table on the 5th floor because that's where the hospital personnel park. The attendants are there to approve their parking tickets. When I first started using the parking lot and noticed cones blocking parking spaces, I wondered what that was about.  I finally asked. They said, "We're saving it for our customers." What that exactly means, I'm not sure.  Who isn't a customer?  They told me just to ask, and they would move a cone for me.  This morning, as I pulled up to their table after 3 other cars had passed the attendants, one of them ran out, waved to me, and opened a spot. I was just grateful that I had a spot and was too tired and lazy to question the ethics of my advantage. 

    Then there was the rush to get to the cafeteria before it closed at 10 am.  There was something wrong with the elevators.  One was definitely out of commission; they were working on it.  The other four were stuck on the floors.  I only had seconds left.  I ran up a flight of stairs, slid onto the cafeteria line just before they closed the final door.  

    There were no more scrambled eggs left in the bin.  I ordered one egg over easy, copying what one of the other customers asked for.  I grabbed my two pieces of whole wheat bread for toasting, some butter, and a glass of orange juice, and went back to get my egg. I've never ordered anything easy over.  It was a somewhat runny egg.  I still don't know if that's what easy over means. I'm 78 and learn something new that some 6-year-old already knows.  

    I went down to Mike's room and spoke to the nurse.  Dwayne was no longer on.  He had his four days off, and Joyce was his nurse.   They told me that he was still on the ventilator but doing okay. It was a dialysis day.  One of his favorite things to do, not.  But, absolutely necessary if he is going to survive.  

    At 11 am, Damon, and I had a conference with the Palliative care team, a doctor, a nurse, a doctor in resident, and a social worker.  Damon was in LA, so this was all done on a conference call. Damon's first question, which he had already asked the ICU doctor, was, are they keeping him alive for him or for us. He made it clear that we don't want them to keep him alive for us. Later on, in the conference, someone in the team thanked us for holding this position.  Apparently, there are many people who want to keep their loved ones alive regardless, for years and years and years. They're just warehouse on life support. No one in this family feels that way.  This is a highly functional man who had a full life until this pancreatitis attack. I'm interested in seeing some changes in his personality, a deepening of his spiritual life, but not if there's nothing for him to look forward to.

    We learned that there was a small spike in his white blood count.  Apparently, this is a result of the after-effects of pneumonia. His lungs seem to be clear, but the pleural sacks are still draining fluid. I don't know how serious this is.  If he has a bad infection, I think we can pretty much give in. His body can't take much more.

    Damon asked questions about how to deal with the end-stage I hadn't even thought of.  He asked about hospice care.  The team asked us at what point are we prepared to let him go.  This means how long a period of time during which there is no improvement and his condition continues worsen.  Damon and I both said, "Two weeks." One week seemed too short and three weeks seemed too long.  Damon and I are frequently on the same page.  

            It gives Mike comfort that Damon and I are working together. I think Mike's afraid of my decisions because I'm more into alternative medicine than he is. He's learned to keep his mouth shut if I seem to be doing all right with my approach.  This has been the one big ideological difference we have: what resources to use when there is a physical problem.  We have been known to shout at each other around medical decisions.

    The other question the team asked us is what to do if his heart fails.  I had my answer, which was to do everything.  Damon spoke first, "He said to let him go. He came in with a strong heart.  If it fails, it means the rest of the body is so compromised, the heart cannot serve effectively anymore." I hadn't thought of those implications of a heart attack. When I heard his thinking, I agreed with him.

    The team asked us who Mike was before this pancreatitis attack. We told him all he was involved with: serving as a deacon at St. Michael's, which involved doing masses on weekends, and going to various meetings, teaching two bibles study classes a week, serving as the spiritual director for the diaconate problem, which means traveling to Oahu once a month for a weekend and going to San Francisco once a month for three days to participate in spiritual direction training to get a certificate, and being the president of the board of directors for west Hawaii's Habitat for Humanity.  Not to mention, cooking every night, paying attention to me, loving our dog Elsa to death, and exercising.  He has grown into a wonderful all-around guy. I'm proud as punch of him, and  I absolutely adore him.  

            His greatest gift to me is that he allows me to love him. This is a gift I also give him.  There are some people for whom loving and being loved represents a power struggle.  Mike and I don't do that.  Many years ago, many, many years ago, I was in a loving mood, and Mike felt he wasn't; he had the only appropriate response I can think of.  He said, "I'm so jealous!" Whoever feels the most loving is the winner in our relationship.  

    I was taught a complete contradiction to that attitude by my parents.  I father had a joke: "How is a man's love like a glove. The only way to keep it is not to give it back." He was actually telling me that to keep a man's love, make sure I never let him know I love him or never actually love him in kind.   What an awful way to live.

    When I got back to the ICU ward, I ran into the doctor on duty for that time. It had been made clear to us that the surgical team would not operate on him because he was too weak to survive.  The purpose of the surgery would clean out all the dead pancreatic tissue.  There is another, less invasive way to do this, but it also has its risks.  Dr. Izawa, the doctor who is the primary deciding physician on Mike's case, had told us that they hadn't been able to get a tube directly into the pancreatic sack. Mike's pancreatic sack is kind of hiding behind his spleen, making it hard to get to without doing damage.  They had tried an alternative approach of putting in a second abdominal tube, hoping that it would be contiguous with the pancreatic sack and help drain it.  I have had no information on the effectiveness of this second drain one way or another.  Dr. Izawa is away at a conference right now. Still, he had said that different radiologists, the ones who placed the drain while looking at images of Mike's insides, have different levels of skill and willingness to take risks.  I said I wanted to wait until Izawa gets back before we try anything else that may be risky.   Also, it is Izawa that is enthusiastic about trying this.  I don't want someone who is lukewarm just doing something I suggest.  Bad mojo.  I also have to discuss this plan with Damon, and, of course, with Izawa, when he gets back.     

    When I got back to the room, Mike was up and responsive. Joyce had lowered his Propofol so his blood pressure could stay up during the dialysis.  Dialysis lowers blood pressure, and so do sedatives.  He was into banging his arm, which signals he wanted something.  I asked him the usual questions, and then I asked, "Do you want to die, to end this suffering?"  He signaled, yes.  I told him, "Not yet." Not as long as there is hope you can live and have a decent life.  I told him that Tom's recovery, the fellow who had severe pancreatitis like Mike, took  5 months.  I told him that Damon and I, and Jean, just had a conference with the palliative team about this exact subject.  We will never allow him to go on like this forever. But, as long as there is hope, we want to work for his survival. I assured him that Damon and I are making this decision together. In fact, if Mike can be sufficiently conscious, he can help make that decision.

    I was going on giving him as much information as I could. He made a circling gesture with his hand. It's the gesture he makes when he feels I'm rambling on about something he's not interested in, and he wants me to stop.  He calls this bibble babble.  I said, "Bibble babble?" He nodded yes. "You want me to shut up?" He nodded yes.  There were two men in the room at the time, a deacon in training, Marlo, who visits once a week, and the respiratory therapist, who was watching to see how well Mike was breathing on his own without the ventilator.  They laughed, and I could see a mischievous smile on Mike's face.  It was small, but I know that look.  Loved it! I was never so happy to be told to shut up in my life.

    Then he started banging again.  As well as I could make out, he was complaining that he wanted to pee. This constant sense of urgency sounds horrible to me.  Earlier, when Mike had signaled his need to pee, I asked the nurse.  She said he had a Foley catheter in.  I had remembered Dwayne saying he took it out. I let it pass the first time, but when Mike continued to complain, I chased Joyce down, told her what Dwayne had said, and asked her if she was sure he was catheterized.  She said, "Yes, I peeked." Well, that pretty much put a cap on my questions. I was also told that the Foley leaves you feeling like you always want to pee.  What I nightmare!  I had to go back and tell Mike that there was nothing I could do.  He was going to have to find some way to put his mind on something else. 

    I don't know if I got what he said next right, but it seemed to me that he wanted to hear some lecture on Catholicism. At that point, Nurse Joyce came in and said that a team of people would need an hour alone with him to clean him up, massage him, change some bandages, and turn him.  I decided to head to the ashram to pick up his Powerbook.  In passing, I asked Joyce if she could shave him.  She asked if I meant with an electric razor.  Yes. So, that would be good, too.

    I drove a very tired Jean back to the hotel. Then I went to the ashram to pick the items up. When I got back to the hospital, Mike was out of it again.  They had upped his Propofol and knocked him out.  Joyce had asked him if he wanted to go back to sleep again, he had said yes. 

     After they finished cleaning him, Dorothy and I went back into his room. She sat knitting and listening to an audiobook on her phone.  Mike was asleep. I sat and wrote a good part of this log. Then it was 6:30 and time to go.

    Dorothy had checked out of the 5-star hotel with plans of sleeping in the cabin with me tonight and tomorrow night before she returns to the east coast.  We had dinner at the ashram. She was delighted with the food, particularly the dessert,  a triple berry concoction made with farina. Our mom used to make a farina pudding with a raspberry sauce.  We both remember it with joy.

Sunday, February 24, 2019

Good news: No change for the worse. 

Neutral news: They changed his blood pressure medication to something with an M, which he can take in pill form when he gets out of the ICU and at home. They are weaning him off the L medication.

Bad news: No change for the better.

    An uneventful trip back to the ashram last night.  I tried to turn on the TV, but it says it was not connected to anything. If I really want to watch something, I can watch it on my computer.

    I woke up shortly before 8:30 am after a good night's sleep.  My back didn't hurt while I slept, but it did when I got up.  Today for the first time, I tried applying the KT tape to my back the way Yvette recommended I do. I had called her for her professional advice. She said to apply the strips parallel to my spine instead of across it.  I had thought that I wouldn't be able to it on my own.  But necessity is the mother of invention.  Wow!  I couldn't believe what a difference this made.  I was a new woman. 

      I called the hospital at 8:30, as usual, and was told, "Your son just called," meaning Damon. I think they're a little annoyed by all the repeat phone calls. They told me Mike was the same.

    When  I got here, I learned there had been some small changes.  They had tried to have Mike breathe spontaneously, on his own.  He was able to do it for a while, but then started breathing very rapidly.  They turned up the support again. The ventilator was set at 16 breaths a minute.

    I also learned they were switching his blood pressure medication.  Due to the dialysis, he is now suffering from low blood pressure.  They were switching him to a medication he can take orally when he can swallow again.  

    Also, they removed the Foley catheter.  He wasn't producing any pee, and they asked him directly if he wanted it removed.  He said yes.  What a surprise. They're supposed to be damn uncomfortable.

    The whole family was here again today: Damon, Cylin, August, Jean, Randy, Dorothy, and me.  Everyone has had some time with him yesterday and today.  Cylin sat with him for quite a while while we all went out, can't remember why.  Cylin has a great sense of humor, much of it is in her delivery.  She said she was the only one really qualified to sit with Mike, who is a deacon in the Catholic Church because she was the only one who was a cradle Catholic. She's a lapsed Catholic, but she was there from the start, unlike Mike and me, who converted. Love her sense of humor. 

    We took turns being with him.  He was basically out cold except for a few unexpected moments. Fentanyl will do that to you.  I have to assure him his mental state is not a reflection of some brain damage, just the drugs. When I was talking to him, he raised his arm and did some banging.  

    There is a wonderful story about what happened when Damon and Cylin were in the room talking to each other about the ashram where I was staying.  They were commenting on how beautiful it was, how perfect it was for my needs. Mike started banging with both arms.  They asked him if he wanted to hear more.  Bang! Bang! Bang! So, they told him how the people there all knew me and took care of me, how the food was good, how my accommodations were comfortable and safe.  I am so glad he got to hear that I'm okay from someone other than me.  I think he was unprepared to take my word for it.  But when he just overheard Damon and Cylin talking, he believed what they had to say.  

    Mike worries about me a lot, even at home, when everything is going well. No, there is nothing particularly wrong with me that he should be so concerned, he just is. But the good news here is his response shows that he is aware of what is going on and my continued presence.   I would say he has a reasonable cause to worry about our current circumstances.  The situation is extreme for both of us. I'm going to have to go home for one day at least so I can get the taxes together, but other than that, there is no place I'd rather be.  Thank God I got turned on to this writing gig. It is relaxing and fun and removes me from the worst of my anxieties as I work to figure out how best to express our circumstances. I think everyone knew before this that I was a wordsmith.  

    Damon, Cylin, and August left today to return to LA.  August has become our mobile One-Man-Genius-Bar.  He fixed my phone, Jeans' tablet, and my Kindle.  He has turned into a lovely young man.  These kids have done an excellent job parenting him without spoiling him.  I was concerned there for a while. But so much of the outcome depends on one's true intentions.  I think these two kids wound up being great parents.  However, I know too, some great parents still wind up with kids who have problems.  Luck must play a role in the process, genetic luck, and the luck of circumstances that you can provide your child/children with what they truly need, a pat on the back or a kick in the ass at the right times.

    Randy, his sister, needed some time with him. Dorothy stayed with her while Jean and I went to the ashram. Jean hadn't seen it yet.  When we got there, she asked if she could take a nap.  She had shared a room with Dorothy the night before and had trouble sleeping because Dorothy snored.    Jean has hearing problems, but it doesn't protect her from hearing folks snore.  Now that doesn't sound fair.  Go figure!

    We both took a nap. Apparently, I snored, too.  I kind of knew I was.  I was sleeping on my back.  I was having trouble achieving deep sleep because I had some incidents of apnea. If my head is at a certain angle, I snore.  I do believe it disrupted Jean's nap time.

    Dorothy called to find out where we were.  Randy had headed back to the hotel while Dorothy remained with Mike.  Dorothy was sitting there, knitting and listening to something on her headphones when we walked in. We're discussing the possibility of Dorothy moving into the ashram with me for the rest of her stay.  She said she was too tired to think about it at this time.  Yes, sitting and doing very little is very tiring. Dorothy, Randy, and Jean came all the way from the east coast; they had time-change problems to boot. 

    Cylin asked about his pneumonia.  I finally thought to ask the nurse, Dwayne, about it.  He looked it up and said there is no indication that there is any fluid in his lungs at this point.  Certainly, there is no infection.  His pneumonia was always caused by aspirating his own bile and never by a virus or bacteria.  However, he is still having some problems with extra fluid in his pleural sacks that surround the lungs.  This excess fluid is a result of pneumonia. He has tubes inserted into those sacks, one on each side, to draw the fluid out.

    The respiratory therapist, the always adorable Augustine, came in and turned the ventilator up to 18 breaths a minute from 16.  I asked Dwayne why they thought he wasn't breathing on his own.  He said there were several possible reasons.  Anxiety plays a role, but also, he is just too weak to breathe on his own because he is so sick. Ow!

    I stayed with Mike until 6:30pm.  I just sat there and typed. I was so absorbed in my writing, I didn't even think to remind him of my presence periodically. I just assume he can feel that I am here. But of course, I don't know that for sure.

    I packed up to leave and actually open the door to his room without saying goodbye. I don't know what this means. When I went to do my departure ritual, he felt difficult to connect with. I told him he better not just check out on me.  Or, am I checking out on him?  Or are we moving into a relaxed stable state which is not negative?  I don't know.  If anyone has any experience dealing with the stages of  a prolonged illness of a loved one where death is always an immediate possibility and a healthy life is also a possibility, but not an immediate one, I would be interested in hearing about it. I'm afraid if I start relaxing and stop fighting, I'll send him the wrong message.  Could the information that I'm okay without him watching over me every minute means he feels it's okay to leave, permanently? Or is this distance only a sign that he is more relaxed, less anxious about me? I'm trying to find the best way to respond.  I feel I have to be careful. It's like treading on slippery rocks in my slippery crocs. 

    I called Dorothy as I was leaving the hospital.  We had considered having dinner together either at the ashram or in Waikiki.  She was tired, and the idea of making a big deal about dinner didn't feel right to me.  I headed directly to the ashram.  I knew today was the big celebration day for the Krishna community in Honolulu.  When I arrived, there were about 30 people dancing and singing in the temple room.  Dancing and singing is the form that their worship takes.  I went around the back of the house and entered the dining room from the outside.    There was someone there cleaning tables.  I asked if there was any food left. He said, "I'm sure." When I went up to the buffet set up, it was empty.  I asked, "Should I go inside the kitchen?" "Yes." The large serving trays were sitting on a table and I was told to help myself. Some potato dish, deep-fried broccoli, nan bread, a bean dish, and a cookie.  Govinda was there.  He had noticed that I hadn't been there for dinner.  He said he would bring me something to drink.  Usually they serve a lemonade  mint drink.  Sometimes it is actually green.  It is different with every batch.  But, tonight's drink was an avocado drink.  Govinda said, "You'll like this." And, I did.  It is milk with avocado, I assume  blended together, and sweetened.  It is good.  When I was finishing up, Govinda brought out the whole vat that the drink had been made in.  He was trying to push it off on me.  I said, "Can't that just go in the refrigerator?" Yes, but the problem was he was concerned that he would just drink the rest of it himself. He's a slender man. He can afford that luxury. 

    After dinner, I went to the cabin and called Judy, my hanai mommy, to tell her I was okay.  I always let her know when I've safely arrived somewhere.  She frequently comments on how well I'm doing, living and driving in a strange town with people I don't know.  You know, I think my whole life has prepared me for this.  I was a kid who went to camp and loved it.  Mike has frequently said, if it weren't for him, I'd be living in a closet. Does a bed in a bathroom qualify?  I like camping out, making due.  I find it fun and adventurous.  Mike finds dealing with the unknown like that a nightmare, CHAOS!!!  To each his own.  I feel like Brer Rabbit thrown in the briar patch. 

Saturday, February 23, 2019

Good news: Stable. Able to breathe spontaneously for a short time while still intubated.

Bad news: Stable, no real positive changes.

ˆ    Before I say anything else, thank you to all of you who have sent cards.  

   

    The bed in the ashram was reasonably good.  My back wasn’t worse for sleeping on it, and lying down relieved the pain.   I woke up around 8 am and spent some time rolling around on a tennis ball to help my back.  I discovered that I got more relief applying the ball to the right side of my spine even though the pain is on the left side.  When I was up, showered, and dressed, I had breakfast out on the grounds of the ashram.  Very relaxing.  Then I went to the hospital just to have some contact with Mike. I don’t know if this is true, but I believe his circadian rhythms are set to my coming and going.  I get there in the morning between 9:30 and 10:00 and leave around 6:30pm.  I am his clock.  

    I had called the hospital at 8:30 am, right after the shift change was complete, to see how Mike was.  They told me stable.  The story was a little more complicated when I got there.  They had tried to reduce his dependence on the ventilator. They can set the ventilator to breathe for the patient, or they can let the patient breathe on their own with the tube still down their throats.  They made a spontaneous breathing test.  He did reasonably well, and so they tried to leave him to breathe on his own.  His breathing became very rapid, and they had to put him back on supported breathing. When he was in the ICU before, he actually pulled the intubating tube out on his own. Apparently, this is not uncommon.  It has to be a pretty uncomfortable feeling.  Fortunately, he had been breathing on his own with the tube in, and they were planning to take it out the next day if he continued doing well. Since he was able to breathe on his own, they left it out. Who knew it could be so complicated?

    While I was there a respiratory therapist in training, this adorable young woman, Augustine, came in to work with Mike.   She was the one wrestling with adjusting his breathing apparatus.

    The ICU doctor came in too, Dr. L., who I don’t think likes to deal with relatives of patients. I asked him if he knew if the second tube draining his abdomen was, in fact, successfully removing anything from his pancreatic sack.  I wondered if there were any amyloids in the liquid.  He corrected me with an obvious distaste for my ignorance.  Apparently, the much sought-after material is an amylaid, not an amyloid, if I have it correctly yet. Arrogance is very difficult for me.  I thought they could just pull fluid from the drain bag and test it.  He suggested it would be a more invasive procedure than that.  He also thought I was telling him what to do instead of asking him for information.  This guy has a few problems.

     He then proceeded to tell me that Mike was a very sick man with a very difficult to treat disease and left me with the impression that there wasn’t much to hope for.  While I am aware of the possibilities, it still hits me hard every time I hear a doctor say it outright. This wasn’t a man who has a lot of patience with unhappy family members.

    It is absolutely true that there is not much they can do for him other than keep him alive and make him as comfortable as possible with some hope that his body will do what it has to do.  They avoid aggressive steps because each one has its own risks.  But to not take those risks creates another set of risks.  Again, Tom’s story about his battle with pancreatitis gives me some hope.  Without it, I don’t think I could have any.  Mike is one sick puppy.

    We were told that the only risk factors for pancreatitis were: alcohol consumption, high triglycerides, and a traumatic injury.  Mike had none of those factors.  They were thinking that it was one of the drugs he had been taking, which sometimes causes it on an off chance.  Tom’s was trigger by gallbladder surgery; he had a gall stone.  This could be considered a traumatic injury, even if it was medically advised. Dorothy found that the various treatments of kidney disease also can cause this problem. The PD (peritoneal dialysis) has a higher chance of causing pancreatitis than HD (hemodialysis dialysis) does. Mike has been on HD since November.  The one thing we can be grateful for is that he is no longer using the fistula to receive dialysis.  This came about because the last donor had to drop out.  Mike was about to go on a week-long trip to the mainland and Oahu when I learned this, and I didn’t tell him before he left.  Instead, I went to work on alternatives.  The PD was too far away; the doctor recommended that he have an HD port installed immediately.  If he was still wrestling with the fistula for an entry for the HD needles, I don’t think he would even want to live. Apparently, his veins are too small to make this a viable option.  Every time they tried to do the dialysis, he was in terrible pain.  I didn’t even realize how much until the day he came back from dialysis, having used his new port.   What a difference!

    I left the hospital, I went to the Ala Moana Mall to meet the gang, Damon,  Cylin, August, Jean, and Dorothy.  Holy cow! It’s the largest mall I’ve even see.  The mall parking lot rival airport parking facilities.  And it has some of the fanciest stores I’ve ever seen and some I’ve never heard of. It’s like walking down 5th Ave. in Manhattan.  Dorothy commented, “crazy rich Asians.” I think that’s their desired clientele.  

    Damon and August were wrestling with my broken phone.  They had initially wanted me to buy a new one.  I remembered that I had Mike’s with me.  He wasn’t going to need it immediately, so I charged it the night before and brought it in.  I met everyone at the Apple Store. August did all the work.  He exchanged the sim cards.  Only one problem: I couldn’t download all my information to his phone because I don’t know Mike’s password. Not only is he not in a position for me to ask, he probably wouldn’t remember it anyway.  I can’t remember my passwords from one minute to the next. It might be a good idea for all of us to have a record of our passwords in our regularly updated wills. 

    While Damon and August worked on my phone and Jean’s Powerbook, Dorothy, Jean, and I went shopping.  Jean needed a bathing suit and a light sweater for the freezing cold of the hospital.  I wear at least one sweatshirt and sometimes two and a scarf to keep warm.  Mike’s room in the ICU has one wall of windows, and the sun does a nice job warming part of the room.  

    Dorothy bought bananas for her and me, and I bought some wipes to clean my glasses.  I do need some other stuff, Dove soap and, of course, more Hersey Milk Chocolate with whole almonds. Although, I find my appetite is so repressed that I can’t finish an entire bar in one sitting right now.  I’m sure things will improve with time.

     In preparation for Mike’s sister’s, Randy, arrival, to give her time with him alone without me around, I went with Dorothy to show her the ashram.  It is lovely and peaceful there.  The community has created a spiritual space.  Also, there is this huge banyan tree on the property.  Dorothy took a picture of me in front of it and had me take one of her.  The main house was originally a mansion.  I was told it was built by a Japanese family.  I suspect they were Buddhists and planted this tree because it is under this type of tree Buddha is said to have attained enlightenment.   I tried to Google banyan tree-Buddha (also called a Bodhi tree), so you could get some idea of what it looks like, but I couldn’t find a single image that would give you an idea of how this particular one looks.  The one at the ashram is much larger and broader than any I saw on the Internet.  When Dorothy was standing under it, it dwarfed her.

    Govinda, the manager, came by as we were sitting in the garden.  I said, “Guess who this is?” pointing to my sister.  We are sometimes taken for twins, although we don’t share a single feature.   We left from there to go back to the hospital.  Dorothy and I sat quietly, me typing up Friday’s log and her playing a game on her phone, or the two of us occasionally talking quietly.  It was delightful. I hope the vibes we were creating were also pleasant for Mike.  He likes it when I’m comfortable and happy.  

    Damon texted us and told us to be at the hotel around 7:30 pm. Dorothy and I left the hospital around 6:45.  When we got to the mall parking garage, we both discovered that neither of us had properly noted where we were parked because we were talking.  We started on the 3rd floor with no luck.  We finally found the car on the fourth floor.  

    The trip to the hotel went smoothly; I was able to drive a lot faster than 9 mph.  I had some trouble with the Pay and Park parking box.  I wound up paying twice.  Okay, it was a mere $8 total.

    This was the first time I would see Randy, Mike’s sister, in a long time.  We have some interpersonal difficulties, and I’m not very comfortable with her.  We all ate together around a round table. Randy and I made a point of not sitting together.  Unfortunately, her presence still wore on me.  My back was killing me throughout the whole meal.  I’m sure there were other factors as well: couldn’t find my Tylenol, and the chair wasn’t ideally suited for my back problem.  I went home around 9:30.  Damon and Jean walked me to my car.  There was stuff in the back that Cylin had left that she had bought that day. She needed a pair of shorts for August.  She had packed for him on Thursday while he was at school, and she forgot to pack shorts for a trip to Hawaii. Fortunately, she didn’t forget his bathing suit. The Prince Waikiki  Hotel has a great swimming pool.

Friday, February 22, 2019

Good news: He's stable, and there is no sign of infection in the abdominal area.

Bad news: No significant change, and there is some sign of possible infection in his lung area, pleural sack, I believe.

He has had two more interventions: a Foley catheter and a gastric tube into his small intestines through his nose, bypassing his stomach, and avoiding triggering responses from his pancreas.  Pretty sneaky.

   

    This was moving day for me. I had to move from the hotel back to the ashram.  They had room for me again. I loaded up my luggage and was out of the motel at a reasonable hour. I wanted to go to Costco to get gas.  The gas warning light beeped went on while I was trying to get there.   It was a new route, and Lady Gaga was confusing me.  I don't have any idea where I went. I resolved to follow her to Costco or stop at the first gas station I saw. I've had that car for over two weeks, and it just now needs gas.   I found an Aloha gas station; (Yes, we have a gas station named Aloha.), fueled up, and set Lady Gaga to get me to the hospital. 

    They told me this morning that when they scanned his abdominal area, they indeed found some urine in his bladder. That's both good and bad news.  Good news because it means his kidneys are still functioning at some level, but certainly not enough to keep him alive without dialysis. Bad news because now they have put a Foley catheter in him permanently. 

            The nurse also told me that they put him back on a blood pressure drug that they had taken him off. His blood pressure was dropping again.  

    Damon, Cylin, and August arrived around 10 am. Mike's room has a door with a glass window.  I went in and told Mike that Damon was here to see him.  Damon went in first and spent some time with him.  Then Damon brought in Cylin and August separately. It's rough for 15-year-old August to deal with seeing his grandpa in this condition. They left to have lunch while I sat with Mike.

    An infectious disease doctor came in and gave me the information that the bacterial cultures from his abdomen show no sign of infection. That's incredible.  Very hopeful.  However, an infection can start at any time. He does, however, have some bacterial something in his lung area.  When all these tubes were inserted, they preemptively threw every antibiotic at him. This way, any bacteria that might have tried to grow was suppressed.  It is still possible that they will rise up in protest and win the day, leaving all of us who love and value Mike the losers. The doctor determined that there was one antibiotic that she was giving him that clearly had no function and took him off it.

    Damon plus two drove with me to the ashram.  When we got there, Damon kept saying, 'This is incredible.  This is perfect for you, Betty." I am in a cabin with three beds, one is bunk bed. It's not the elegance of the Prince Waikiki, but it is perfectly functional – and it has a bathroom.  Damon promptly broke it in.   I could see he was relieved that I was staying somewhere comfortable.

    As we were walking across the grounds, I spotted my friends Jamie and Hari. I met them over dinner at the ashram. They are not Krishna's; they only frequently eat there.  Jamie is the one who brought me flowers.  Lovely.  I sat down and with them while Damon, Cylin, and August carried my belongings into the cabin.  I finally also got myself something to eat.  It was so good to be sitting in the sunshine in beautiful surroundings.  I was reenergized.  

    I stayed a while longer at the ashram, enjoying the surroundings while D, C, and A caught an Uber and back to the hotel. Damon's mom, Jean, and my sister, Dorothy, were arriving today from New Jersey.  

    Mike's road is very rocky. We never know when some bump will be his last.   Everyone wants to say hello, and if necessary, good-bye.  Dorothy texted me, remembering how Mike helped her straighten out her checkbook close to 40 years ago. Mike has touched all our lives.

     The medical team is looking out for infections in a big way now. This is the next big hurdle Mike must pass through. They would not do another bacterial culture.  They would be looking for other signs of infection: drop in blood pressure, high white blood cell count, and a high fever.  There may have been a fourth criterion, but I'm too tired to remember it. The infectious disease doctor pointed out that since Mike does not have a compromised immune system, his body will respond to an infection appropriately by turning up the heat. 

      I think everyone would be in despair now if it wasn't for the information Tom Wnuk gave us about his trials with this disease: 5 months in and out of hospitals.  He detailed all the procedures he went through.  They sound a lot like Mike's.  Tom is out there to say, "There is life after pancreatitis."  We're all holding on to that glimmer of hope.  The doctors have told us it would be an up and down journey, but hearing that from someone who went through it and survived feels very different. It alters our perspective.  

    Here are the other interesting developments of the day.  Mike has been put on a feeding tube that bypasses his stomach, thus avoiding exciting the pancreas into action. Irritating the pancreas is still a concern.  This means he will be off the TPN, which is the intravenous nourishment he has been receiving.  Things are so bad, I almost referred to the TPN as food.  I doubt you will ever find it on any restaurant menu. Just as well. They gave him Propofol to keep him calm and put him back on Fentanyl to deal with the pain of the Foley and for the pain of the procedure.  I hope he's up somewhat tomorrow.  More family is coming on Saturday; Mike's sister is coming in.     

    Since they didn't do dialysis on Thursday as they planned, they did it today.  He was asleep for much of it , or at least not anxious. Of course, he is on Propofol, the drug that killed Michael Jackson. It's an antianxiety drug that doesn't make you sleepy. The dialysis nurse was not one of my favorites.  She stares at her computer the whole time and pays no attention to the comfort of the patient. As she was about to leave, I said he needs to pee. She is standing between me and the door and said, "They just cleaned him up." I said, "Get out of my way!" She giggled and did. I went to get the nurse and get help for Mike. 

    Cylin, my daughter-in-law, had Propofol when she had some eye-surgery.  She said it makes you lose your inhibitions.  She thinks she was singing during the procedure.  I realize now this drug may explain some of Michael's behavior the other day when he returned from having the first tube put in. His celebration of the reduced pain was joyful, but his complaints about some other pain were not so welcome.  If I had been told that his unusual behavior wasn't just a result of his relief, I wouldn't have reacted as I did when his complaints started.  I told him to can it.  He was yelling about a discomfort just as loudly as he had yelled about the initial stage of the pancreatitis attack in the emergency room in Kona.  

    The respiratory therapist came in while I was here too.  She said they are going to reduce his respiratory support.  She put him on a spontaneous breathing trial, which means he will be breathing on his own.  If he does this successfully, they can move toward extubating him. This is a step in the right direction.  I asked if extubation means he can get out of the ICU. She said it was only one step in the process.  There were still other criteria.  There is no question that at this point, Mike is being kept alive by medical intervention. Two more tubes have been added today: the Foley catheter and the feeding tube. 

    I left the hospital a little earlier this evening. Damon called from the Prince and said dinner was poolside, the only eating place with any openings left.  I had to be there by 6:30.  While I left promptly at 5:45, the traffic was running at 5 to 9 mph.  When I told Damon that had been my speed, he said, "Oh, you were being careful." No. Driving 9mph when everyone else is driving 45 is just weird.  No, that was the speed of the traffic during rush hour in Honolulu. It is one of the joys of living here.   

   The poolside menu wasn't great, very limited, but the view of the sunset was spectacular.  Mike and I get something like it every night in Kona from our lanai.

I find I appreciate them more over time.  And then, and then, once it was dark, there was this spectacular firecracker show; apparently, there's one every Friday night.   I left for the ashram and my first night in the cabin.