Closing the Books on 2022!

We knew we would be scheduled to be in Houston close to Christmas. Jim’s appointments this time were for a blood draw, of course, Doctor visit and an infusion. First one was at 7:30 AM which is always the blood draw. Before we got to the Doctor visit the results were in and continued to look good. Whew! No extra doctor appointments, scans or tests.

When Jim asked the doctor how he (Jim) was doing, he responded “Really well.” He said that Jim continues to have good tolerance and a “complete response” to the drugs. The Doc said that when that shows up early, as it did for Jim, that the likelihood of reoccurence is really minimal. So that’s good news. He had a couple other questions about the fatigue the drugs cause and when that would be over. And we asked about whether or not we could book that trip to Europe that has been evading us for three years. The Doctor said, “You should go.” As soon as we got home, Jim got to work and we are now booked on a trip to Paris, Amsterdam, a Viking River Cruise to Budapest, then to Krakow and Auschwitz. We will be gone for the month of August. We have good friends who feed and visit Carmella so hopefully she will be OK for that long. She won’t have Fluffytail to keep her company since he apparently got placecd in a shelter and hopefully adopted.

A few things have happened which put everything he’s going through into sharp perspective for us and helped us appreciate what we’re going through even more. And to be even more thankful.

First.

A friend from our bus travels posted a note on Facebook on November 28. She said that she and her husband of 53 years had both had the flu for over two weeks. She started getting better but he didn’t. They are located in Yuma, Arizona during the winters and he ended up going to the hospital. There they took blood and discovered that he had the flu, pneumonia and discovered he also had Acute Myeloid Leukemia, an aggressive, fast growing blood cancer. They said that if he had chemo he might last one to two years. No chemo? Two to four weeks! At first I thought that was a typo and she must have meant months.

They started the chemo to give themselves some time to discuss things and he had a seven day course. After a couple more days in the hospital after that, he went home. For two days. Then they found he had blood clots in his lungs so back to the hospital he went. The family was called. Two days later he died. It was eighteen days from diagnosis to demise. Her family was with her during this time but she rightfully said, “Nothing prepares you for the death of a loved one.” What a terrible shock and right before the holidays. Makes us appreciate M.D. Anderson, our doctor and the clinical trial’s success all the more. As if we weren’t already grateful…

After what we’ve seen happening with friends around us this was a real eye opener.

Second.

While I was in Yoga, of all places, my phone rang. Of course I silenced it but called the number back later. It was a friend and it turned out she was at M.D. Anderson and had some questions. Her husband, who had a stroke a few years ago and can’t see or walk well was diagnosed with Melanoma. She was asking about where we stayed, parked and maneuvered while at M.D. Anderson. I was happy to help since it can be overwhelming to navigate, even if you’re able-bodied. He apparently had a course of chemo while there and has to return for surgery and more treatment. Jim had started baking bread for the neighbors for Christmas and they were on the list. It’s going to be a rough winter for them.

Another way M.D. Anderson is exceptional; all your appointments are either early or on time. After the Doctor visit was over this time, we decided to head to the infusion center even though his appointment wasn’t until 1:00 PM. They got him in early and we were finished up by 4:00 PM instead of 5:00 or 6:00 PM.

We knew that when we got back to the Rio Grande Valley that we were in for a drop in temperatures related to the winter storm. The last time we got below freezing was for a week in February of 2020 and our power was out for over a week. We had to go get the bus to stay warm.

We got up early on Thursday to get home early enough to try to save some of the garden. We each drive the same leg of the trip each time and shortly after we had switched drivers, I got pulled over outside of Kleburg in a construction zone. Now, Texas drivers drive FAST but, construction. Jim had just angled back his seat and was taking a little rest when I passed the local Constable. Then I saw him pulling out and his lights on. I said to Jim, “I’m getting pulled over.” It was a busy area and he approached the passenger side window. He said I was doing 79 in a 60 MPH construction zone. OOPS! He asked where we lived and we told him we were Winter Texans and heading back to Edinburg from Houston. He asked what we were doing in Houston and we both pulled the cancer card and told him we were returning from a treatment. I figured a 19 mile over the limit ticket was going to be expensive. He took my license and insurance and went back to his truck. When he emerged I didn’t see a piece of paper in his hands. When he came back from the truck he said he was just going to give me a verbal warning and to slow down. Then he wished us Merry Christmas and we enthusiastically responded Merry Christmas! Somehow, right then, I knew that even when the cold weather came, we weren’t going to lose power and things would be fine. I drove the speed limit (which is 75) the rest of the way home. I slowed down for construction too.

It was predicted that we would have below freezing temps for four mornings. When we got back, we covered the elephant ears, rubber trees and a few pots. The castor beans were on their own since they were as tall as the house. I have lots of seeds.

Before:

That rubber tree covered with the blue tarp is over 10 feet tall and the brown tarp one is even taller. They both made it and are standing tall again. I cut some of the sweet potato vine and brought it in the house in case it wouldn’t regrow from the roots. All in all, everything came through just fine. The castor beans got bit at the top but I am going to cut them back to a hedge and see what happens. And we didn’t lose power during the storm!

Christmas was quiet and cold but it started warming up. Jim grilled steaks and we had them with roasted carrots and mashed potatoes. Jim is still not doing any indoor activities because we don’t want anything to jeopardize the clinical trial. So no dances or indoor Happy Hours. It won’t be long until we can do all that again, we hope. There are several viruses going around the park and we’re not taking any chances. As he told our financial advisor, “I’m not being antisocial, just asocial.” He is determined.

This was the end of his ninth cycle of 13 treatments plus the pills he takes every day. So we have January, February, March and April for a monthly infusion, then a return in May for a scan and the end of the trial! We are so very grateful that it is working! We couldn’t have a better ending to the year.

Wishing you all the very best in 2023. Remember, enjoy every day!

The Short, Sweet and Sad Tale of Fluffytail

We had heard that there was a stray kitty around the park but we hadn’t seen him. One evening he showed up in the garden under the birdbath. He was just sitting quietly. Carmella saw him but didn’t exhibit much interest. Several others in the park had seen him too and some were feeding him.

A couple mornings after we first saw him, he showed up in one of the free-standing flower boxes right by the porch. This time he had some things to say. I had noticed that the zinnia seedlings I had growing in the boxes weren’t doing too well Now I knew why. He decided to lay in the dirt in the boxes, messing up the plants. Once he was here for a day or two I transplanted one box into the other so one was empty. He laid in one half and once he started eating, used the oher side as a litter box. At least we knew the plumbing was working.

He was friendly and very vocal. When we went outside, he followed us everywhere in the garden, getting dangerously underfoot. He quickly got the name of Fluffytail because of his very long and very fluffy tail. Soon we started calling him other names like Fluffy Butt, Fuzzy Pants. We could tell he was starving so in a moment of weakness, we started feeding him. This picture is from December 9, when he discovered that the porch was a whole other world.

Look at those paws! We knew he was still a young cat, probably not quite a year old. For the next few days, every morning he was in the box. When he saw us inside the house, he started yeowing until we brought him out his food. We fed him in the shed because in our ongoing discussions, we knew that if we adopted him, we would need to start him out in an enclosed small space so he could get used to using the litterbox and acclimate. He’d probably never been inside a house and when we fed him in the shed, he got wary if the door started to close.

What to do? Of course we thought about keeping him, getting him all his shots, blood tests and neutered. Our sixteen and a half year old cat, Carmella was our main priority and we didn’t want to do anything to upset her apple cart. Jim was pretty adamant that he wanted Carmella to live out her life as an only cat. When we got the kittens Astrid and Carmella almost 17 years ago, we had two other adult cats, Tikita quickly became a mother figure for Carmella but Narcissus, the big white male cat wasn’t so sure about them. He kind of receded into himself and a few months later he got sick with we don’t know what and after they couldn’t figure it out, he got worse and we had to put him down. I always wondered if he died of a broken heart because of the kittens and it was not a nice feeling. We certainly didn’t want that to happen to Carmella. What to do?

A few more days went by and it became clear he wasn’t leaving. He let us pet him, begged for pets and let us pick him up. It was clear he had been around humans because most of the strays here are feral and wouldn’t let you get near them. I started going around the park to see if anybody would adopt him. He followed me to one friend’s house who I knew would love to have a kitty but when I beseeched her to take him, she said, “I’d have to give up a perfectly good husband.” The cat was shy about meeting her even after he followed me all the way to her house. She came over later to meet him but was firm in her denial.

We started calling around to various animal shelters, animal control, the county and any adoption facilities we could find. The friend who gave me the dog food suggested a cat only shelter in Corpus Christi. We have to go to Houston next week anyway so we figured we could take him then. We offered to sponsor his shots and neuter and adoption fee but they were also firm. Same answer everywhere, nobody had any room to take in a stray. People here in the Rio Grande Valley have a very casual attitude about spaying and neutering and this is the result. It is not unusual to see packs of seven or eight dogs wandering around and naturally there are lots of dead animals on the roads.

Very frustrating and stressful trying to figure out what to do and if we should just bite the bullet and keep him. Meanwhile, of course, he was growing on us. Another friend had several cans of wet dog food to give away because her dog went on a special food. I got them because by this time, after just a few days, he was eating us out of cat food fast. When I carried his bowl to the back of the garden, he seriously earned the name Underfoot. By the time he got halfway there I could say “Let’s go to your bowl” and he would run ahead. So he’s smart too.

On Wednesday morning I woke up after not sleeping much, trying to figure out what to do. Jim was softening on keeping him by this time, but Carmella was getting so she wouldn’t even go out on the porch, which is where she lives. Finally Jim found a place in Weslaco, about an hour away, where they said if he could get there within a certain window that day, they would take him. So we agonized some more. Finally after coming in from feeding him again, I decided that we should take him and turn him in to Animal Control since they were the ONLY ones who said they would and they had more resources than we did.

We put his food in the cat carrier and got him in after a brief struggle. Jim said he was good in the car and settled down right away, When he got there, they explained the procedure. They keep him there for a few days, then see if a shelter will take him. If they do, he will get adopted out. If a shelter won’t accept him, they euthanize him.

WHAT? The girl said it was very likely that they would accept him because cute, friendly, orange long haired fluffy-tailed cat. He made her promise that if he didn’t get placed that she would call us and we could come and get him. She assured him she would. On next Wednesday we will be in Houston but we will throw the carrier in the trunk just in case she calls and to ensure that she doesn’t.

Some people here fed him but didn’t try to get him a home. One friend said he had caught him twice in his trap and turned him loose both times. I’m glad we persisted and found a solution, however unsatisfactory it may seem. I just hope we did the right thing.

Say a little prayer for Fluffytail that he will be placed and will make somebody a very nice Christmas and lifetime kitty.

Halfway to the Finish Line

For the clinical trial, that is. I know I haven’t updated much (at all) lately so I figured I would wait until after our October monthly visit to do so. The August and September visits were uneventful and everything was looking good. One of the drugs causes Jim some fatigue but hey, we’re old and retired so how can a little rest hurt?

On the way to Houston.

At the September visit the doctor mentioned that in October they would do another PET scan just to make sure everything was on track. At one of those visits he brought up the initial scan and compared it to a recent one. The difference was amazing. In the early scan his spleen was very enlarged.

Compare from May 2 to October 24. In May his spleen was, as the doctor said, “Huge!” In the June image, his spleen was “Nonexistent!” according to the doc. He was really pleased with that. The lymph nodes showed evidence of disease in May, but in the second and third scan they disappeared. The very dark spots are organs, brain, heart, bladder, etc.

This is all really good news. We also found out that this cancer is even more rare than we thought. I thought it was like 13 people in 100,000 get it. The doctor said it was one or two people per million! How lucky are we that we have an expert in the field just five hours down the road? At the Number One cancer hospital in the world? Jim asked him if he had people come from all over the country and he told us they come from all over the world to be treated here. He also told us that since the study has been so successful, they are expanding it by double. That means instead of 26 people in the clinical trial there will be 52. Remember, rare. He also said that when these results occur so early on in the trial that there is little chance of recurrence. The clinical trial will be over in May 2023. His last infusion, scan and bone marrow aspiration will be in April. Then maybe we can finally take that trip to Europe we missed out on the last two years.

Motel Motif: Houston.

As if all this wasn’t enough going on… Our good friends Doc and J were getting ready to come down for the winter. They were putting their boat up at the lake when J fell, breaking her hip and wrist. She had surgery on both the same day but recovery will take awhile. They are our KC Chiefs watching, Joker, dinner and other pals. We will really miss them as they are trying to sell their house here.

A couple days later, Jim’s phone rang while he was getting a haircut. I looked and saw the name of a good friend and neighbor from Kansas. I let it go. When Jim called back, he got the friend’s wife, who told him that she had gotten up that morning to find her husband dead on their kitchen floor. “Stone cold dead,” she said. And she had just been diagnosed with breast cancer and had surgery just days prior. He was four years younger than us and never got to retire.

Another couple is dealing with early onset Alzheimer’s for the husband. These are longtime friends we met in Mexico and meet up with frequently. It has been going on for a few years now and he is starting to lose weight and fall. Nothing broken so far but their doctor told them it would happen more frequently as he loses strength and his knees buckle on him. Don’t fall! As we always said before heading out in the bus, “Be smart, pay attention!”

We are very happy that Jim is heading in the right direction and that the outlook ahead looks good. We are so thankful for Jim’s progress, our little house and garden, our sweet 16 year old kitty, our amazing financial advisor and all the friends who have shown such love and concern for us.

Remember the old saying “Be kind to everyone, as everyone has something going on.”
Practicing gratitude is a full time job.

About Those Student Loans…

Everybody seems to be up in arms about the recent “forgiveness” of student loans, up to $20,000 per person. For some this might seem like a lot but if you went to school recently, and entered any kind of specialty, your loans could be much higher. Still, better than nothing.

A lot of people seem to think that people who chose not to go to college are now stuck with paying for the loans of those who did. That is simply not true.

I will paraphrase an explanation I read recently. If I loaned you $100 and said I would charge a dollar a day interest until the balance was repaid. After 300 days you have not paid me anything so you now owe me $400. Imagine I say, since I am a nice person, that I will forgive $100 of your debt so now you only owe me $300 and the interest continues. Do you understand that this would not actually cost me any money? I’m not spending any more money, I am erasing money that never actually existed.

That’s how student loan forgiveness works; it’s not actually costing anybody any money. Your taxes are not paying for this because nobody is actually spending any money. The amount of debt being forgiven is less than the amount of debt that was created by capitalized interest on the original loans.

I have also seen all the items that say something like, “Well, I had to pay back my student loans, so you should have to too or it’s not fair to me.” In other words, If I had to suffer, you do too. That’s like saying we can’t cure you of cancer because all those other people died from cancer and it wouldn’t be fair to them. And my favorite is “I had to pay back my student loans and I turned out OK, so you should too.” That tells me that you really didn’t turn out OK.

Here’s my student loan story.

When I went to college after high school, my parents said they would pay for four years of college but they had to be continuous. Fair enough. I headed to Colorado State University and spent three years coasting along and partying. I just wasn’t interested in school after three years so I quit. My mom and dad were plenty pissed but they reminded me about the four year deal.

Fast forward a few more years. Now I was living in Columbia, Missouri and working for the University of Missouri, basically as a graphic designer. When I asked my boss for a raise due to these new design duties I was told they couldn’t pay me more because I didn’t have a college degree. OOF!

Since I worked for the university, I was able to attend classes at a seriously discounted rate. I took advantage of it and took as many prerequisites and art classes as I could. Then the project I was working for came to an end. No more discounted classes but I could get financial aid. So I did.

I probably had about a year and a half to get my BFA in Fine Art so I kept going. I loved college and did much better and was more highly motivated than when I attended CSU. I guess I finally figured out what I wanted to do. I made the Dean’s List every semester and got some Curator’s scholarships for good grades. In 1980, when college was still fairly cheap for in-state residents, I graduated with my Bachelor of Fine Art degree. I even used one installment of my student loans to put a down payment on a house. Mortgage interest was 11% at the time, so I had to hustle to make my house payment. The loans could wait.

I started doing some free lance photography and a girlfriend and I started a housecleaning business, The White Tornadoes. That was pretty lucrative and we did fairly well but I still didn’t make enough to start paying back my student loans. They sent me notices and I finally started paying back what I could, which wasn’t much. I guess they just wanted to see some good intent.

In about the mid eighties, after working at a couple of photo labs and free lancing, I got a job at the University Police Department as a Night Watchman. I worked the night shift, which I never could get used to. The money was pretty good and the job was super easy, just take my ring of master keys and check on my assigned portion of the campus. I even had a patrol car to drive around in and I worked on my own, no partner. If I found anything unusual I could call it in but I don’t think anything like that ever happened, except one night we were all called to a building that had a fire.

Being able to have the keys to everything was great. My natural curiosity led me to explore all the darkest depths of the university and find all the hidden places. I discovered where the best couches were for napping. I had a radio so if they called me I could respond. I found lounges where the dark and quiet made for a good snooze. I also explored the theater department costume room, which had some fabulous finds. I got a really good look at the inner workings of the university.

One night I was assigned to an area of campus that included all the records for the student loans. Remember, this was way before the days of surveillance cameras and computers; everything was on paper. I decided to see if I could find my student loan file and I did. It detailed everything I had borrowed and paid back and how much I still owed. I spent quite a while trying to decide if I could make the file “disappear.” I don’t remember what the balance was at the time, but it was considerable for my income.

I ended up putting the file back on the shelf and leaving the office and locking the door. I figured I knew where it was so if I changed my mind, I could always go get it. I never did.

I didn’t get my loans paid off until about 1995, the year we moved to Kansas from Washington DC. I had been paying all along and finally decided to just pay them off when I could. What a relief that was!

My theory about loan forgiveness is that everyone who is eligible should take advantage of it. I also believe that higher education should be free in the United States like it is in other countries like Finland, Mexico, Brazil, Argentina, France, Spain, Germany, Russia (!), Italy, Iceland, Norway, Holland, Portugal and Denmark, to name a few. Since 1973 the average income has actually gone down while all other costs like housing, food and college have gone up. I know people who have been paying on their student loans for YEARS and still owe more than they borrowed because of compound interest. If they could have paid it off all at once they wouldn’t have had to borrow. And I think it is obscene that we spend so much on “defense” and various wars around the world. What if we used that money to fund higher education?

We all benefit from an educated society and a population unburdened by debt.

Still BIG BIG Lucky!

When we began this cancer adventure and the doctor here said it was time to start treatment, Jim was adamant about going to M.D. Anderson for a second opinion and options for a clinical trial. From the beginning we have both been very impressed by their professionalism, compassion and knowledge. The hospital is one place that isn’t air conditioned to death and almost all his appointments have been early or right on time. Each member of the team has their specialty and they are top notch.

As I mentioned before, we went to Houston every week for five weeks in June and early July. For the first couple of infusions he had a slight reaction but after that he was fine. Our now monthly trips consist of two days driving and a day of appointments in between.

A few scenes along the drive:

When we decided to put a new floor in the house, he was back to his usual self, moving and painting furniture, taking down and replacing shelving units. It was truly a heartwarming sight seeing him do things he probably couldn’t have done a couple of months before. Good thing we had to wait!

At the end of July it was time to go back and start the fourth cycle of treatment. These appointments were for a PET scan. which takes a couple of hours, a blood draw (of course) a visit with the doctor and the targeted immunotherapy infusion. He had his annual physical here before we went and the results of that bloodwork were completely normal! Promising.

The PET scan went fine and by the time we saw the doctor he had the results of both the scan and the bloodwork. Bloodwork was in the totally normal range. He had the first scan before treatment began and the doctor put them side by side onscreen to compare. The results were amazing! I can’t believe I didn’t take a picture but the recent scan showed no cancer at all, where the previous one had highlighted areas including his spleen and lymph nodes.

The doctor had two words; “Complete remission!” We looked at each other in disbelief; we were shocked and grateful. So early in the treatment, which will continue for the next nine months. Of course we want the treatment to continue and that will include another bone marrow aspiration later in the schedule. But, cancer free! The doctor asked us what we were going to do to celebrate. Jim said, “Get the infusion, then have some Liberty tacos,” a place we have ordered from several times. The doctor is a cute little Italian guy and he was so excited he was bouncing around in his chair showing us the results. He gave Jim a big hug.

When we left the doctor’s office Jim said, “Well that was easy.” And he’s the one getting his ass kicked. Whew. We’re still in shock but in a good way.

We can’t say enough times how glad we are that we settled on M.D. Anderson. As a friend here commented when we got back, “Jim has pep in his step.” And we both have hearts full of gratitude.

Back home:

Thanks so much to all who have reached out to us to offer support and good wishes. We are thankful for you all and know we are still BIG BIG lucky.

Now For Something Completely Different…

We knew we had to go to Houston every week in June but figured it was doable. Of course it was! We also knew that would be the extent of our travel while Jim was in the clinical trial, a total of thirteen months. Since we wouldn’t be buying diesel for the bus we had to figure out another way to spend some money. Ha!

One day Jim said, “You’re going to think this is crazy, but I’ve been thinking about getting a new floor in the house.” Funny that he mentioned that because I had been thinking the same thing. We knew we wouldn’t be able to install it before July because of the weekly travel but one afternoon we went to a couple of floor places and found one we liked. 

The main part of the old floor would have been fine but it is a small house and two rooms off the main section had different types of flooring that connected to the main area. We wanted it all to be the same and much lighter and brighter. 

A few “Before” pictures:

The bed frame and accompanying dressers had to be taken all apart. They were very dark also. We decided that with everything out of the house and apart it would be a good time to paint it too. So we set up shop under a neighbor’s carport and fought off the flies while putting two coats on the bed.

Before:

And After:

We bought and painted new baseboards for the whole house. The day the install started the project coordinator came out and got the crew lined out since they only spoke Spanish. We asked her to have them wear masks and they did. The first day…

The next day they were wrapping it up about mid-day when Jim discovered a whole bunch of the backer rod left over, like 600 feet! That made us wonder if they had even installed it. As part of the warranty they were supposed to install the backer rod, then seal the perimeter of the floor with silicon. The dishwasher needed to be sealed with silicon too but they said they didn’t have any and would come back the next day to finish. When they didn’t show we started calling the store and finally the corporate office when nobody called back. That’s when we found out that the day they finished the project coordinator tested positive for COVID. Great.

The store said they would send somebody out who hadn’t been in contact with her. After several more phone calls, they came back. Removed all the baseboard, sealed the edges and caulked. We thought we were finally going to be finished. After they left, I was vacuuming in the bedroom when I discovered damage to the floor. They had dragged the bed on the floor creating gouges in two of the planks. Now they’re coming back on Monday to fix that.

We have four boxes of material left over, 600 feet of backer rod and 80 linear feet of painted baseboard. Obviously the estimator was a little overzealous. We have to return it to the store ourselves to get a credit and they already said that because the baseboard was painted they wouldn’t take it back. We’ll see about that.

Anyway, First World problems I know. We will get it figured out. Anyway, we think it looks great. Extra added bonus; it’s easy to clean.

We haven’t updated in awhile but will get back to it now that we only have to travel once a month. Update on Jim and our latest visit to Houston soon. Really.

Moving Forward… Step by Step

Let’s see, where did we leave off? Our first visit to M. D. Anderson was a whirlwind of tests, doctor visits and ended up with us finding out that Jim had been mis-diagnosed initially with CLL instead of SMZL. As I stated before, lymphomas have a better prognosis. So there’s that.

When Jim made the hotel reservations for this visit we found out that the hotel we had previously stayed at, and really liked, had doubled in price, up to $300 a night! Urk! Needless to say, he found another one and it worked out fine too. We also found out that almost all the hotels have what they call a “medical rate.” We will take advantage of that going forward.

He was scheduled for a PET scan at 11:00 AM Monday in Houston so we had an early breakfast and were in the car and on the road at 5:00 AM. The trip is a fairly easy drive and there was little traffic. We arrived to find out that the PET scans were running about 45 minutes behind. This was the first time there was a delay in his appointments. We also met with the cardiologist, world renowned and he has a script for the fluid problem. It was just barely out of range so should smooth out OK.

Everything seemed to be on track for our initial visit with the new doctor and hopefully, the start of the clinical trial. On the second morning at the new hotel, Jim killed a bedbug! Then we found another one. We called the desk and they got us another room, a suite actually. No extra charge.

The room was nicer though and no bedbugs.

Motel Motif: Houston

Here’s the view from the first room. And the second.

However… After the first day of tests and appointments Jim got a message in his portal that the new doctor had COVID! And wouldn’t be able to meet with us on Wednesday as planned. This was a setback since we would only meet with his PA. I don’t have a very good opinion of PAs in general from my experience with shingles. We just hoped this wouldn’t necessitate another trip to Houston, plus a longer wait before he could start the trial.

The next day we had “off” so we took a friend’s advice and drove to Kemah, a small town on the coast with a boardwalk and lots of seafood restaurants. We walked around the boardwalk, had a margarita and some shrimp cocktail, then to dinner. It was a nice respite.

Wednesday morning we met with the new doctor’s team. We weren’t sure what to expect but the first girl in the room indicated that we would be able to start the trial! That day! Whew. And I must say, his PA was many steps above what I have ever experienced. Once we were done in the office we headed up to the pharmacy and got the first month’s drugs. For free! That is the beauty of (some) clinical trials. This one will last thirteen months. First month is pills. When Jim asked about side effects of course there is a twenty page fine print list of every side effect ever. When asked what he could actually expect she said the first drug caused headaches and the solution was coffee. Simple enough.

So no more visits to Houston for the rest of May. Nice to have some time off. The first drug does indeed cause headaches but the coffee works wonders! And it doesn’t keep him from falling asleep.

Some of the doctor’s team are there to help with any financial assistance that is available. As we saw from our first few visits, costs can add up fast. And the second and third drugs in the trial had a co-pay of like $3500 a month. They helped us do the legwork and we got the two other drugs covered by a foundation set up by the pharmaceutical companies. That was a big relief, although I still don’t think healthcare should be tied to profit. . And another foundation is going to pick up our expenses for lodging, gas and parking. Another big relief. As far as food, we need to eat wherever we are.

So we are off. In June we have to go to Houston every week for an hours-long infusion each week. None of the drugs are chemotherapy; they are targeted immunotherapy. Then once a month for the next eleven months.

Heartfelt thanks to all the people who so kindly responded to my initial post. We have received messages and encouragement from many corners; thank you so much. It means a lot.

In an interesting aside, one of my sisters responded to the Facebook post about Jim having cancer with a HaHa emoji. Nice. And she is a cancer survivor herself.

As I’ve said from the beginning, the blog is a way for us to keep track of ourselves. Once this is over we can look back and see how things progressed. As my dad said once when I commented on how fast the years were going by, “When you get to be my age, they just roar by.”

This is one year I won’t mind seeing go fast.

A Bump in the Road…

I’ll take 2020 any day. During the pandemic all we could do was hunker down, wash our hands and await the development of the COVID-19 vaccines. I added to my Fiestaware collection and set the table every night for dinner. Swam laps, gardened and practiced Yoga. Jim played his ukulele, getting better all the time. We went to the store once a month and stocked up on everything. Made whatever we wanted to eat. We stayed in Texas all summer and didn’t travel in the bus at all. Jim didn’t even go for his annual physical since Doctor’s offices were a hotbed of activity and possible infection. More on that later.

Come 2021. We were both double vaxxed. We figured it was safe to get together with others who were also vaccinated. Slowly started to emerge. It felt good and strange at the same time.

Jim went for his physical in March 2021. When he got the results of his bloodwork his white blood cell count was very high. His doctor figured it was a flukey test and ordered another one. That came back high too. In a call with his doctor Jim pleaded with her to give him her best guess as to what could cause this. She didn’t want to answer him but finally said “Leukemia.” She recommended a Hematologist Oncologist and we scheduled an appointment. Off we go down the rabbit hole.

When we met with the Hematologist Oncologist he came back into the room with Jim’s results and said, “Not to worry.” He diagnosed him with CLL. Chronic Lymphocytic Leukemia, an “indolent” blood cancer that was very slow to develop and may not need treatment for years. Not the best news but I guess if you have to get cancer, a slow moving one is best. The doc said that something else would kill him first. And once he might need treatment it is a targeted immunotherapy, no chemo. So that’s good news. The doctor wanted to see him every three months so we made appointments and kept going.

One of the symptoms of CLL is fatigue. Jim started experiencing that after a few months. His spleen was also enlarged and keeping him from eating as much as he wanted. His white blood count kept going up. Finally, this March the doctor here said it was time to start treatment, just a year after diagnosis. Whatever, let’s get it rolling. But first we scheduled a trip to M.D. Anderson in Houston for a second opinion with a CLL specialist and a whole battery of tests. We planned on staying about a week to fit in all the tests and consultations.

Before going to Houston for our initial consult we were able to enjoy two weeks on the beach in Mexico. Then, since we knew Jim was going to need treatment he scheduled a prostate procedure in Austin. That all went really well and he’s glad he did it sooner rather than later.

Houston is exactly a five hour drive. We left on Easter Sunday and the traffic was light and we made good time. We got pulled over at the Falfurrias checkpoint, because of our South Dakota plates. Plus the dog barked. We have been through that checkpoint many times in the bus and they always waved us through. This time we had to get out of the car and wait in a separate area. The agents asked us why we were going to Houston and asked “Family?” We said no, cancer. They let us go after that.

M. D. Anderson lived up to its reputation. All the appointments were on time or early and we never felt like they were rushing us when we asked Jim’s ever lengthening list of questions. The CLL specialist recommended a clinical trial using a combination of three drugs. We just had to wait a couple of weeks to see which arm of the trial we would get in and whether it would require travel to Houston every time. Time for things to start looking up!

We got the tests all jammed into a few days and there were a lot of them! EKG, echo-cardiogram, CT Scan, Bone Marrow Aspiration, blood pressure, blood draws. I’m surprised he has any blood left. On the last day we had a consult with the CLL doctor and felt encouraged about the way things were going. We got away from the hospital fairly early and were back home by mid afternoon.

A few days later, right before we went to bed Jim received an email from the CLL doctor. Based on the second part of the examination of the bone marrow they discovered cells from a different kind of cancer, Splenic Marginal Zone Lymphoma. Even though the treatment for it is similar to CLL, we were out of the clinical trial and basically, back to square one. And he needs treatment. Oh, and it is very rare, like only 13 in 100,000 people get it. Two of every hundred non-Hodgin’s Lymphomas are SMZL. Not exactly a large study group .

It turned out that he had an appointment with his doctor here coming up on Tuesday the 26th. The doctor here had all the M.D. Anderson paperwork and confirmed that both CLL and SMZL are present but he said this makes the prognosis better. How he figured that I’m not sure. And the treatments are very similar. During the time we were waiting for the doctor Jim was able to get two appointments next week at M. D. Anderson to see a SMZL specialist and a cardiologist due to some fluid around his heart, common with lymphomas. Hopefully he will be able to begin treatment soon. They said he would almost immediately gain some relief and start feeling better. We are definitely looking forward to that. Of course, our Viking River Cruise in July is cancelled. We had moved it back from June but still wouldn’t work. We received a voucher to book within two years and our trip insurance covered the flights and hotel stays. He will be in treatment and we will most likely need to go to Houston during that time. First things first.

We have good cat care arranged. We could take the bus (and the cat) to Houston but we would also need to drive the car since we need it for appointments. And the car is a lot faster. You can make it a five hour trip since you can go 80 MPH. It would take at least two days in the bus. With diesel prices as high as they are now, we figured it would cost us $1000 to take the bus to Houston and back each time. So the money for hotels, food and parking is basically balanced out. And we didn’t really want to do all the gearing up for the bus trip that it would take.

We now have appointments at M. D. Anderson on May 2nd, 3rd and 4th. He has already talked to a specialist in SMZL, the lead researcher and a financial person. We will go to Houston May 1. He will have a PET scan for baseline markers, an appointment with a cardiologist and then the treatment will start on Wednesday! They say you start feeling better almost immediately so we are looking forward to that. M. D. Anderson doesn’t mess around. We are thankful that this little curve ball is straightened out and we can actually proceed. We are grateful that we have each other to lean on as we go through this.

Please keep Jim in your good thoughts as we navigate forward.

It Takes a Village…

To go on vacation! We had booked two weeks in Mexico at our favorite little resort in Xcalak. We booked last year too but got shut down by the pandemic. This year we are vaxxed, double boosted and were raring to go do nothing on the beach.

We had been looking forward to a real vacation, one where somebody cooks for you, cleans for you, the whole nine yards. People think when we’re in the bus that we are on vacation all the time, but we still have to shop, cook, clean, drive and all related activities. Our two international trips got cancelled last year. We’re still not sure about our Viking River cruise in July since Putin decided to start a war over there.

Leaving our cat, Carmella, was a little more complicated this year. Normally, during vacation we leave them alone and someone comes in to feed them and empty the box. For fifteen years, her entire life, she had at least one other cat to keep her company while we were gone. Since we lost Astrid last summer, Carmella has grown into being the “only cat.” All of a sudden she loves Treetos and asks loudly for them. She is just as social as ever, maybe even more. We were a little worried about her being alone for two weeks. Our regular cat feeder and waterer, Susi, was enlisted to cover the food, water and box. She also gives Carmella head butts when she visits and even plays Meece with her. And gives her catnip, of course.

On a last minute idea, I decided to ask our new next door neighbors if they would come over in the evenings and give her some pets and belly rubs on the porch. They have a lovely Rag Doll kitty, Finnegan, who they take on walks in his custom cat stroller. He loves his stroller and even goes in the car with them, sitting between them on the back of the seats. He has also sampled the catnip we grow and he loves rolling around in his stroller when I bring him some. Sandy and MaryAnn agreed to become designated cat petters and that worked out great. Sandy said it got so she was waiting for them at the door and would jump right up on her freezer to get “kitty kisses and cheek scratches.”

So, Mexico…

Our beachfront cabana looked right out onto the sunrise each morning. I quickly learned what time to get up and walk to the end of the dock for the best view. Then it unfolded, different every day. After sunrise I went back to bed to snuggle before we made our way to the palapa where we met up with our friend Michael, who we met at Playa Sonrisa way back in 2004. Unfortunately his partner Randy has passed on. The resort provides fresh pineapple and other fruits including mango, papaya and zipotle, a very sweet fruit. There was lots of hot coffee, juice and delicious “egg bombs” a daily offering of egg, chorizo, avocado and cheese. In one combination or another.

After a walk on the beach it was time for some some serious reading time. I finished five books while we were there and brought home the best one, Cloud Cuckoo Land by Anthony Doerr. I am about halfway through it. 

One day we took a drive down toward Belize where we used to own property. We planted some of these smaller coconuts. We sold it last year. 

Then we drove a little further toward Belize where Russ and Judy said they had seen crocodiles. We didn’t see any. No turtles either.

On the way back we drove around town. The landscaping in the cemetery was lovely.

Some of the food we had…

Back at Sonrisa. Michael cooked us dinner one night and we got to see the sun set from the top deck of his villa. Our last night we celebrated Cindy and Michael’s birthdays. And we ate and drank. The conch shell designs are pretty but unfortunately the sargassum coming up from Brazil has killed lots of the conch.

We went to Costa de Cocos a couple of times, once for margaritas. They are very good. When we went for dinner one night the margaritas were good but the service was terrible. One guy was the bartender and the waiter, and as Murph said, probably the cook too. It was the weekend… after all. And we ate at Silvia’s a couple of times when people said it had quite improved. Well, maybe a little. We miss The Leaky Palapa.

We had a relaxing stay in Xcalak. Russ and Judy were there for the first few nights. When they left Michael and we were the only guests. Very quiet and relaxing. When the hotel is full there’s like ten people there. We drove to Puerto Morelos for two nights on the way back, part of which involved a COVID-19 test. Negativo!

We found more good food and drinks there but the area around Tulum, Playa del Carmen, Akumal and Cancun has just exploded in growth since we were there last. Good reason to head farther south to Xcalak and Playa Sonrisa, where all you need is your smile.

Carmella was very well cared for in our absence. She was anxious to get outside to her catnip plant upon our return. And there is catnip in the bottom of the basket she lays in.

Thanks to our very own village! We couldn’t have done it without you.

Ten Years After

My mom died ten years ago today. She was 95 years old. She had a rough childhood having been born with infantile paralysis, then contracting polio at age 13. Her parents were determined and gave her constant physical therapy, so much that she always said she had exercised enough for her whole life. She went on to lose her first husband to kidney disease on their first anniversary, which was also her birthday, January 31.

Today, February 16 was also my brother’s birthday. When Mom died, my sister Cherie said “Dunc came down and scooped her up in his strong arms and took her home.” My brother died in 1993 about a year and a half after my dad died. It was a tough time for Mom, but she persevered until 2012 when she had a couple of strokes within a few days.

I had seen Mom on Valentine’s Day and we had dinner together at her senior living center. A couple of weeks earlier we celebrated her 95th birthday at the center where they had entertainment and food. I brought cake for the residents. She said, “This is all for me?!” I didn’t tell her it wasn’t and she had a magical day. There were a few signs I missed at the time. When I arrived for the Valentine dinner she said, “I don’t feel very good today.” But she rallied and we went to dinner. She had her favorite meal, steak and baked potato and chocolate dessert and ate it with relish. When I wheeled her back to her room, she wanted to take a look at the shadowbox of portraits I made for her entryway. We looked at the photos and said who was who and talked about them. When I left I told her that I loved her and would see her in a few days. Early the next morning, I got the phone call that she had a stroke and wouldn’t make it until the weekend. They wanted to put her on hospice but we were leery of that because she had already “graduated” from hospice once. They said it was mainly for the oxygen so she would be comfortable and after the doctor reassured us that she wasn’t going to last long it was Oked. A couple of days later we got the call that she had passed.

She ended up living a charmed and full life. She and my dad traveled extensively to all parts of the world. After Dad died in 1991, we took road trips and cruises with her. When she died Jim and I had planned for two years to sell our house and take off in the bus and now we were free to do that without worrying about her not having visitors. My two sisters lived out of state and seldom visited.

When my brother Duncan got sick in 1993, he came back to St. Louis from Oregon to be with Mom. She took one look at him and knew there was something wrong with him. It turned out he had Wilson’s Disease, too much copper in the blood causing cirrhosis of the liver. He died on May 1 of that year.

From top left, clockwise: Dad and Mom about 1980, Mom on Dad’s lap planning a trip. Mom in New Zealand in 1984, Mom and brother Duncan in 1993 while he was hospitalized, Dunc and his dog Shadow.

It’s hard to believe it’s been ten years. They flew by. We did sell the house in 2014 and since then have visited 47 states in the bus. We have visited friends all over the country, some of whom are no longer with us. We bought our little house and garden in Texas and survived floods, a hurricane and the pandemic (so far). We know there are challenges ahead as we age.

Mom was a fine example of strength, humor and grace under adversity that we take to heart and strive to learn from along the way.

RIP Mom, you really were one in a million.