April Showers

Daffodils in the front garden

There is a saying that April Showers bring May flowers.  Well, we are having April showers right now.  A thunderstorm was prognosticated, and it is currently in progress. I’d like to be out doing a little yard work (mighty little if we are to be honest). Spring is springing due to one day this week when the temp hit 80º Fahrenheit. It really has been pleasant all week.

The unbelievable creativity of the people of the world continues to provide lots of activities for all us who are confined to our homes for the most part.  I’ve enjoyed multiple church services from all over the globe.

Currently I’m watching the Metropolitan Opera Gala which features artists from all over performing solos, and the orchestra actually performing some numbers. If you are an opera lover and missed this is it will be available until Sunday evening at metopera.org.  It’s wonderful to see these artists singing from their homes all over the globe. What a treat!

My chief helper in the office!

A trip to the Speciality Hospital was made on Monday for my last injection to increase my white count. Then back again on Thursday for blood work to see if these injections did their job.  Yeah! My white count is up, my platelets are up and my sodium remains up! Good news. This being the case I will no doubt begin my next round of five infusions on Monday. This chemo seems to be working and we hope that receiving it by infusions some of the problems I had when I took it orally will be eliminated. Tune in next Saturday to find out!

It's really hard to get your drink in the sink and keep your feet dry!

Our Benedictine group had its first Zoom meeting on Tuesday evening. For the first time since the pandemic struck we were able to pray together and visit with each other.  Everyone was present so it was a very good time.  I visited our group in Tempe, AZ, on Thursday for their weekly Chapter Meeting. It was so good to see the Tempe friends again and meet, for the first time, our friends in Tucson. We’ve invited the community from Victoria, B.C. and other places to join us this Tuesday. It is such a blessing to be with our brothers and sisters even if it has to be electronically. It actually a miracle to be able to do this!

The time passes very quickly for me. Thankfully engaging in FaceTime calls and meetings as I have the chance brings the world to my home.  I don’t feel that I’m missing out on much by staying home as I am supposed to.

I hope your week has been good. I pray you are staying safe.  Thanks for your prayers and your concern for me and for our world. Thanks to all who provide for our instruction and enjoyment while we stay safe in our homes. 

Quite a wonderful week.

After our Easter Sunday blizzard/snowstorm (whatever you want to call it) the rest of the week showed marked improvement weatherize, at least. Believe it or not I’m sitting on the deck writing this on Saturday afternoon. It is lovely and warm (67º at the airport) and feels just delicious to be outside.

Due to one of the medications I’m taking I can’t sit in the sun but even the shady part of the deck is pleasant with only a zephyr of a breeze. I’m tempted to spend the rest of the afternoon out here since I’ve completed my tasks for the day and there is not a lot of zip left in me.  So far six bags of soup fixings have been cleaned, chopped and fitted in little bags and are in the freezer! It’s wonderful to have carrots, celery, and onion all ready to go anytime I feel the need to make a pot of soup.

Then ensued the cleaning out of half of the freezer to make room for this lot. Unrecognizable chunks of who-knows-what are now peacefully resting in the trash can awaiting their ultimate fate in the city sanitary waste facility. I’m sure whatever they are were wonderful at a point, but no longer appealing in their shriveled, desiccated and frost covered form.

The dumb waiter has been on the fritz for a few days. I called for repair but have yet to hear from the one who has promised to return my calls. As much as I harassed the architect when he planned a fireplace for my bedroom and a dumb waiter to haul wood. I certainly am happy at this state in my life to have the thing for transporting valuables from one level to the next when I’d like to have one hand on the stair rail. Then, one day it continued to the top of the shaft and remained there instead of descending to level where it was desired. As I pondered the situation, mostly while try to fall asleep an idea came which proved to be salutary and I completed the repairs myself this afternoon. It works beautifully and in complete compliance once again. 

Another home improvement has taken place just yesterday.  Three weeks ago when I was falling all over the place I determined I needed stair lifts if I were to continue living in this three level home. Stair lifts for those not familiar are those little chair things that run up and down the steps.  I contacted a company found courtesy of the internet who came at once measured the necessaries and provided a bid. Another company did likewise. I took the first and slightly cheaper bid and the installation was accomplished yesterday by the nicest, cleanest, and tidiest young man. Mission accomplished ready and waiting for the time I really need them. Sophia assisted in the installation by running and hiding. That young man had a really noisy drill!

New Speciality Hospital

Thursday was the day appointed for labs and a virtual appointment with the oncologist. Instead of the few blocks to the Prairie Center to take care of both tasks, one now goes to the brand new Specialty Hospital to  whence the whole cancer treatment center has been moved. The plan is to use the Prairie Center for COVID 19 patients (of which we have a few cases lest you haven’t noticed Sioux Falls notoriety). I’m pleased they have moved even if it’s a much longer trip for me. Not only is the hospital brand new, clean, and beautiful, but no COVID patients have been or will be treated there which will keep us away from the virus. 

I could tell things would be positive on the lab reports concerning my sodium level, and sure enough my reading is at the top of the normal scale. White count and platelets are low due to the chemotherapy and that is to be expected. The doctor has me going back to the hospital for three days for injections to improve my white count. There is nothing medicinal that can help the platelets. So my next round of chemo won’t be happening until the week of the 27th. I can deal with that option.

Why the sodium is such a big deal.  The oncologist determines whether the chemo is working or not by the sodium in my blood. This cancer feeds on it particularly. So the good sodium reading means the A) the cancer is being affected by the chemo and is being worked against, or B) the medication I’ve been taking to help my sodium level has worked very well, or C) both are taking place which is the ideal.  We won’t know for sure until the next round of scans. But take from me as the gospel truth, operating under very low sodium is not living, it’s just existing and waiting for the next undesirable thing to happen.

The new whirligig

What I can’t seem to deal with at the current moment is my hair falling out all over the house. The shower is a real horror story but there is continual shedding all day long. Sophia is shedding and I am shedding and currently creating a bigger mess than Sophia. Roomba eats up the leavings quite handily.  Most of the curls are gone. They will return, I’m sure.

The whole community is up in arms about the Smithfield situation. It is just awful and something should have been done about it much earlier. The workers have been complaining for some time about the lack of protection afforded them by the company.

In the meantime things are good here at home.  A few friends have stopped by for distance appropriate visits. Now it will be much easier to visit safely on the deck if the weather remains lovely.

Thanks for taking the time to read the blog.  Thanks for the thoughts and prayers. Last weekend and this week were very different for me. As our Presiding Bishop said in last Sunday’s homily, it is very different but it’s still Easter! Alleluia!

Holy Week

Faithful readers, I’m writing this blog day by day and will publish on Saturday. I can barely remember  what happened at the end of the day, let alone a week from now. So if you find weird references it’s because writing backwards takes a skill I do not have. Also, usually I would studiously avoid the pronoun “I” whenever I could. Right now I don’t have enough brain power to do that. Because this blog is basically about me, I hope you won’t be offended by the excessive use of “I.”

Admittedly Palm Sunday was the the most weird day. It was for many of you, as well.  Not being in church, not the doing the preparations were all the things that I missed. The Cathedral blessed the palms earlier in the week so those who wanted them could pick them up by Sunday. I watched Cathedral’s liturgy and the National Cathedral. 

 My hip upon which I fell hurt quite a bit if I walked around although it did improve with steps. I took no anti-nausea medication and fared ok after one session of sickness in the morning. I wasn’t hungry so didn’t have much to eat, if anything.

I did not get sick during the night. So, in other words, I was much relieved in the morning. Because all the medications warned about blurred vision or dizziness, I became extra cautious when moving around. The blurred vision bothered me enough that I cannot read comfortably. And then the pain of the hip prevented much walking around. So I was very much like a vegetable.

Monday morning I was sick the first thing, did not take any medications, or eat as I recall. Later in the morning I did eat a couple of containers of yogurt. I called the doctor’s office to get an appointment and saw my primary physician. He ordered an x-ray and blood test. X-ray showed that there was no breakage or cracking in the hip area. The lab showed my sodium is a little lower than last time but he didn't consider that anything to worry about. I also spoke with the pharmacist and explained to her my problem. She wanted to talk to the doctor before she told me what to do, until she got back to me. The oncologist wants to see me Tuesday so I had another little visit with him which resulted in a change in medication to try to bring up the sodium level.

The upshot of Tuesday’s meeting was the cancer is probably spreading. My sodium level keeps dropping which means it is still  active.  The last MRI showed the brain to be clear.  The part that doesn’t show on any scan is it may be in the spinal fluid on its way to the brain. Not particularly good news. We’ll see what’s happened by the next round of scans.

It was a beautiful day today. We enjoyed sunshine all day. A contractor came to give me a price on a stair lift, and I spent the rest of the afternoon on the deck, getting ready for the tax man and I may actually be a little hungry.  

On Wednesday I woke up hungry which was a new thing. Friend Colleen came over while I took a shower so I was ready to go for the rest of the day and felt really good. Had a nice visit with one of my community members. Also, the income tax man met with me and we got that done. Always a relief.

Thursday I woke up feeling great, had breakfast and a shower and now raring to go. Sophia got whole box of new treats, and two canes were added to the household inventory. I need more than one so I can use one while looking for the other which has been left, somewhere. I braved the basement stairs for the first time in several days, made it fine, went to the drug store to pick up a refill and to the grocery because I was hungry for fresh greens, returned home for the rest of the day which was spent quietly. Didn’t sleep as well as usual, probably because I was already well rested. 

Friday awoke feeling wonderful, had breakfast, a shower, and now am ready to watch liturgies on-line. I’m really grateful for all that is being provided and it feeds my soul. The lack of surrounding people bothers me, but my monastic soul feeds on the quiet. Delivery of hot cross buns happened in the afternoon - delicious. The day ended with some FaceTime conversations with old and dear friends.  What a wonderful invention to communicate across the miles as if one were in the same room with one’s friends.

The good news is I’m back to pretty much normal as far as the working of the brain. The hazy feeling I get from low sodium is improved so much so that I think the new chemo may be working.  We’ll find out next Thursday.

The Eastern Church refers to the Saturday between Good Friday and Easter as the Holy and Great Sabbath, referring to our Lord’s rest in the tomb. It is a very quiet day here so far and I will spend the day as quietly as possible until the celebration begins tonight with the Great Vigil of Easter, which, this year will be celebrated on-line.

The clouds are gathering in preparation for the expected snowfall tonight. Hopefully there will not be much accumulation. It’s supposed to continue through the day. It’s similar to the year I filled in at Good Shepherd Church. We had nice weather all during Holy Week so I had decided we would start the New Fire outside. Those who didn’t want to go out could watch through the large, full-length window in the back of the church. So, on Saturday I hauled over my fire pit and got everything ready, wood stacked and all.  Then in the late afternoon it started snowing. When the time came, my server and I were out in the snow trying to get some wet wood started while everyone else was cozy inside! Another one of the perils of the priesthood!

I know most of your Easter celebrations will be significantly different this year, but we will still be celebrating the great truth: Christ is risen from the dead. By death he has trampled down death, and on those in the grave he has bestowed everlasting life.

Happy Easter!

The Weather ; the Health

       

Friday was another day of interesting SD weather. On Wednesday it was lovely, sunny, and 70º.  Rain, sleet, freezing rain, zero sunshine were on the menu today.  Pick one, we had them all.  Thursday seemedto put all nature in her place once again.  

The speciality pharmacy called to find out how things were going.  I complained about the anti-nausea drugs not working. She suggested that she would have the doctor call.  Instead she gave an appointment for today and I went through my litany about how the chemo or the anti-nausea medication doesn’t do much except make me sick.  He did offer the option of next time having an infusion instead of the pills.  That way the drugs go right into the blood stream through the port and not through the digestive system. I’m going to opt for that I believe.  The downside is one must go to the Center five days in a row. I’ve done three days before so this is not daunting.  It’s at least a trip out of the house.

One of my concerns now is a funny vision thing I have dealt with in the last week.  As one reads there appears an image at the end of the line repeating the last couple of words (e.g. Aaron and Moses went to see Pharaoh. to see Pharaoh.)It is fairly consistent once it begins. It’s most prevalent in the late afternoon and evening, in other words, when one is tired.  I think I’m learning to cope with it. One of the few things people can do in this pandemic is read and when that becomes difficult  it’s one more thing.

When a person used to enjoy computer technology and discovering new things, and then one looses skills, I have to admit it’s frustrating. When one finds the patience is strained. I keep telling myself I used to teach this stuff, but I still don’t understand what is going on.

Monday the chemo arrived, two huge boxes. One was a “welcome kit” containing an ice pack in case I want to pack a lunch. That was about 6 cubic inches. Also it had various creams, a thermometer, rubber gloves.

It was recommend I take the meds at night, which I did and slept very little. Tuesday I took the drugs, slept well, got sick in the morning right after I declared “I really feel good!” Wednesday I took the anti-nausea drugs, got sick, took the chemo and slept like a baby.  I believe I had all the drugs except for the chemo in the infusion so that will eliminate a few meds tonight. Also had a bottle of steroids so that will mean little sleep!

I have a new decoration, one of little patches behind the ear one encounters on passengers on cruises and long haul flights.

Other news. The nausea has disappeared, but the dizziness is worse.  The chemo may cause dizziness also the anti-nausea medication, several kinds now.  When I got up this morning I literally staggered across the bedroom floor.  That passed.  Then I fell two times hitting my head on the wall once. I have called the stairway lift company for an estimate, don’t worry.  Turns out they are out of stock right now but will get back to me next week.  I’m already planning how  tonight and tomorrow will be.

Being a professional fretter one must do that. I know I have to be more careful on the stairs!

Recieved two care packages of food this Friday afternoon. Looks like I am all set for the week end. And I don’t have to cook! 

I’m grateful for all your prayers and good thoughts.  I keep thinking about how blessed I am.

Today was another not too great day.  I slept through the night which I thought to be great.  I wasn’t  that terrific it turns out. One trip upstairs and at “the bend in the road at the top” I look a tumble.  I did find out one thing, that my Apple Watch really knows that I fell and asked if needed help. I came upstairs to haul the laundry down, for a most kindly friend who has volunteered to do that chore for me whilst waiting for a part.  The appliance repair mecca has part on order. That should arrive at the beginning of May.  Until then the laundry is collected and returned all neatly folded.

This was the task I tried to do. I say tried, for in the accomplishment of this process I fell once again and after many struggles finally managed get up. From then on the day went smoothly until I was unable to find my glasses. I accused blessed Sophia of stealing for a toy. I looked everywhere but nothing. I called Colleen to help look for them. After the 3rd pass through the joint by both of us we gave up. After Colleen left I returned to the bedroom and I sat down the recliner, looked down to my right and there they were! 

To my faithful readers.  Please forgive any errors you find.  I have one of those head things going on.  It has taken me most of the hour to write the last three paragraphs. I know I’ve been struggling for the last week. Another problem to investigate! The brain thing is one of the problems that sent me to the doctor last August. 

I look back on what I’ve written and there will be missing words which I thought about but didn’t type. Proofreading is a valuable skill and I need to practice it so this struggle has it’s merits.  In the meantime I’ll depend upon you to notify me of anything that is not understandable, Please.

I share with you a prayer of St. Julian of Norwich which I commend to my community.  You might wish to use it yourself during these months of strange waiting. God be with you,  et omnia.

.

 In you, Father all-mighty, we have 

our preservation and our bliss.

In you, Christ, we have our restoring and our saving.

You are our mother, brother, and Saviour. 

In you, our Lord the Holy Spirit, is marvelous and plenteous grace.

You are our clothing; for love you wrap us and embrace us.

You are our maker, our lover, our keeper.

Teach us to believe that by your grace all shall be well, and all shall be well,

And all manner of

things shall be well.

Amen

A prayer of St. Julia of Norwich

It’s Almost April

Not my garden but I wish

As the day for disposing of another page of the calendar nears, the daffodils in the garden are in a concerted effort to make it look like spring as they push their leaves up through the ground.  Actually they are about five inches tall. Brave souls they are.  Having had rain all afternoon and now snow you know what I mean. The snowflakes are huge! They appear to be about the size of quarters if not larger. The wind has been whipping around so it’s hard to tell from which direction the moisture comes. We have flash flood warnings. The ground is so saturated from all of last fall’s rain, there is no place for more to go.

This week was my first encounter with the enhanced protection due to the COVID 19 virus at the hospital or clinic.  No visitors or companions are allowed in the facilities. One is screened when entering the hospital, questions asked and temperature taken. 

Wednesday I checked in at the hospital for my labs, CT scan and MRI. Funny but I can remember the day (long ago) when there was one MRI machine on a semi that traveled between the three hospitals. This was my fourth MRI at the third location in the same hospital complex! The price of the equipment must have dropped considerably, or not. My considered opinion is that the manufacturer of the MRI “thing” had John Cage compose the sounds which emanate therefrom.

Thursday I was off to see the doctor to find out the results of the previous day. My sodium is down again in the low range. Last test showed I was near the top. Doctor surmised that my normal sodium reading might be in the low category and that the previous test was a kind of fluke. It is one of the readings the helps determine whether the medication is working or not.

The CT scan showed that the liver lesions had become somewhat smaller but the lung lesions had grown slightly again. The conclusion was that the immunotherapy is not working as it should and we need to try something else. So he has ordered Topotecan. Topotecan is a type of chemotherapy drug called a topoisomerase 1 inhibitor. It works by blocking a chemical called topoisomerase 1. This chemical helps to separate and repair the DNA in cells when they divide. Cancer cells need to make and repair DNA in order to grow and multiply.This medication can be given as an infusion or orally and needs to be taken for a week every three weeks. He didn’t want to order infusions because of the necessity of going to the Center and possible exposure to the COVID 19 virus. It has some of the same side effects as the chemo treatments I was taking before.  It looks like I’m about to lose my curls!  Six tablets per day is the dosage along with anti-nausea medication.

The patient advocate came to see me and I learned that Medicare Part B might pay for the medication. If it were considered an ordinary prescription she would have the financial aid person come and visit with me! She called after I returned home and said it would be covered under Part B with no co-pay! I knew that what I had been taking was $40,000 an infusion. If this compares in price it would put me in the poor house shortly. It has to be dispensed though the Specialized Pharmacy and there are numerous instructions about how it should be handled. They will deliver it on Monday. Another step on the pilgrimage.

Sophia and her master spent most of the afternoon in front of the living room fireplace. I with a book and she enjoying a nap.  I’ve not had much appetite this week feeling nauseous from time to time. This evening I do believe that I’m hungry.  Friend Ed brought over a couple of caramel rolls his wife baked today.  I’ve not indulged yet but I’m sure they will serve as my dessert. Discretion will  most likely cause me to save one for tomorrow.

Kindnesses come in various guises.  I received a couple of cards from friends I do not see very often. A good friend came to pick up my laundry and returned it all neatly folded. What a blessing! My laundry does not usually get sent out but my washer died a couple of weeks ago and the needed part is back ordered until May. I’m so blessed and so grateful. 

Thanks for your prayers and good wishes and for all the love showered upon me.

A Strange World

It is indeed a strange world that has been thrust upon us these last few days. Social distancing is a new thing for many of us.  I can remember back in the days before the Salk vaccine we were warned about with whom we should play. We were warned that we shouldn’t run through the sprinkler hose because we might “catch” polio. One of our neighbors ended up in an iron lung. We had to travel to Hot Springs to visit him because only the Crippled Children’s Hospital had the necessary equipment to keep him alive.

Now, as then, the rumors are rampant.  The fear of not having enough testing chemicals or even swabs is proclaimed daily by the news media, and not just once or twice but endlessly during the day. 

Currently in Sioux Falls we are sort of in a state of suspended animation (the closest description I can use). What is open, what is not? So many things have been cancelled. We look for things about which to laugh. Anything to break the somber mood. The organist at the cathedral church when asked about his teaching position at a local university told me that Spring Break would be extended for an extra week and then all instruction would go on-line. He concluded by remarking that he currently had no idea about how to conduct band rehearsals on-line.

It is an act of kindness that several cultural institutions have provided material to keep our minds occupied lest we go stir-crazy during our social distancing. The Metropolitan Opera has provided an opera each night from their catalog of works previously presented in theaters in HD format. So far I’ve enjoyed  Carmen, La Bohème (sad to say that Mimi died again), Il Trovatore, La Traviata, La Fille du Régiment, and tonight I’m looking forward to Lucia di Lammermoor. I see they are extending the kindness (or maybe not) by offering a full week of Wagner following this.

I’ve watched church services, penguins, fish in aquaria, in addition to reading a great deal. So far it’s been rather relaxing. I’ve only made a couple of trips outside the house. I was surprised by the empty shelves and the number of people in the supermarket. Then I realized it’s one of the few places open where one can see other people out and about and walking around.  A pleasant reminder that I am not alone in the city.

A couple of days were nice enough to walk outside but I did not. After the first day of Spring snow storm there were ice and unshoveled walks again. The we had the famous winter storm which stormed across the nation.  Not so much snow fell, but  it was heavy and wet. When out the absence of traffic is noticeable and somewhat shocking.

I’ve been feeling better this week. I’ve been hungry and have cooked a little. The oncologist reduced the medication which I complained about last week to once per day which seems to have helped. Wednesday is the day for MRI and CT scans and then an appointment with the oncologist on Thursday to see how things are going. 

The little kindnesses have been amazing. One of my Benedictine sisters gifted me with some Moroccan stew which provided three meals. Another couple brought over corned beef and cabbage for St. Patrick’s Day, which tasted so good.  Friends in Arizona sent a novel set in this part of the world about a Norwegian musician which will be read shortly. All the prayers and messages are wonderful. Thank you so very much. You have no idea what you mean to me.

There is no question about who is in charge here!

Another South Dakota Season

According to long standing, perhaps even scientific evidence, or at least astronomic lore, there are four seasons. We do have the solstices (2), and the equinoxes (2). We have a myriad of other seasons in this fair state.  They happen whenever they happen and may last for longer or shorter periods of time depending on their mood. Most assuredly they do affect the moods of those of us who choose to live here and at times cause us to question why we do (live here that is).

A recent example, as recently as this morning (March 14) is this photo taken out my front entrance. No further explanation necessary. 

You don’t read this blog to commiserate on the weather.  I’m supposed to tell you about my health or lack thereof. Mention was made last week of my exceeding tiredness. I continued to go downhill. On Sunday I did sing in the choir but I was hesitant to walk down the center alley whilst singing so my position was taken before the first hymn along with the rest of the infirm. The remainder of the day and Monday were mostly spent lazing about. My knees hurt. My hips hurt. I had headaches all of which I blamed on a new expensive med which is so rare it has to be ordered.  I had zero appetite but could, at times, muster up the energy to have half an English muffin for the day’s sustenance. Then for the first time since this whole cancer treatment thing began I had to start taking anti-nausea medication. 

I knew that, come Tuesday, I would have my blood work and meet with the doctor, so if one could continue living until then one might receive some answers.  Preparation for the appointment consisted of underlining all the side effects that might be expected from this new medication. 

Anxiety played a big part in the equation. Way back at the beginning of this escapade, it was discovered that I had cancer because my sodium had fallen into the critical range. The time in the hospital, along with a multitude of other things, was spent on raising my sodium to an acceptable level.  My sodium level has been monitored ever since as an indication of whether the chemotherapy is working or not. For the last months the sodium had been falling which made me increasingly anxious that nothing was working. So with some side-effects of the new medication and no increase in the sodium I was becoming a little more than tense. It was a great relief to find out my sodium had returned to the high normal reading. It also meant that I could drink more fluids.  One has no idea what it means to look at a whole glass of water and know that one cannot have it.

It has taken a couple of days and I’m happy to say I’m almost back to normal. Some of my friends would say, “What does that mean? The implication being that those who know me best probably have never considered me “normal!”

I’m grateful for all your prayers and thoughts. Those who stand by me are such wonderful friends. Love to all of you.