We’ve been there

I didn’t write a blog last week because we were on our way to and from Las Cruces. We had Sunday through Tuesday off at the RV park, so we decided to visit Raymond. We left the bus in Colorado and drove the car, to speed up the trip. We wanted to be able to visit with his doctor(s), so we needed to be there sometime other than a weekend. He was shocked and delighted to see us walk in! He is doing really well, considering that he was just starting week 4 of radiation and chemo. His color is good, as are his spirits. He’s getting really tired to being in the hospital, but it is so much better than if he had a 160 mile round trip every day from T or C, as was the original plan. The hospital is already working on the next place for him to go and I’m really glad God knows all that, because we certainly don’t!

On the way home on Tuesday, we ran into rain just as we got into the Raton Pass area. Just over the top, the left lane was blocked by a pickup on its side, along with a couple of emergency vehicles. Very shortly thereafter, we saw a wrecker and a police car on the right shoulder. The two drivers were looking down over the guard rail, as if wondering how they were going to get to the vehicle that had gone over the edge. I hope the passengers were all right, but I’m sure they had a frightening ride! I did notice that our car hydroplaned a little in that area but we made it safely back “home”.

The volunteers here at Golden Bell are always on the lookout for elk grazing in the local area, but don’t often find them. One evening as we were heading into Sonic for half price shakes after 8, we saw a good sized herd browsing in the rain. The picture doesn’t do them justice. They were just too far away.

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Yesterday on the way home from doing laundry, we topped over a rise and there, right beside the road, was a huge buck with an enormous rack, just casually grazing in the middle of the day. His entire harem, probably 3 dozen or so, was spread out on the pasture behind him. By the time we could stop and turn around, they were all gone to the other side of the hill. Where was my camera when I needed it?

We’ve had several volunteers come and go from the RV park this summer. Some stay most or all of the summer, while others stay a few weeks or a month or two. Two couples left this weekend and another came in. Ted and Kathy Bonner used to coordinate a weekend trip here with their church in Woodland Park before they retired and became full time RVers. That’s where we got acquainted with them to begin with. This is their second summer helping host the RV park and we’re glad they’re back.

We had a real progress report from our granddaughter Jordan this week. Rae is now off of oxygen! She weighs more than 5 lbs. now and once she learns to eat, she’ll be on her way home. She has come so far from her 1 lb. 5 oz. beginning. Prayers would be appreciated for her to be hungry!!

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Rocky Mountain High

High as in altitude, that is. We have a view like this just about every morning on the way to the lodge for breakfast. Sometimes the Peak is clearer, but I think fog and smoke contributed to this gorgeous take on the mountain.

Following sinus surgery in the spring, I was looking forward to breathing more easily this summer, but I really can’t tell much difference. It hasn’t slowed me down much, though! The weather has been great, with a few rain showers the last week. The forest fire that was within 15 or 20 miles of us is almost completely contained and we didn’t even see smoke when we drove west on Highway 24 this week. Other areas of Colorado (and California) aren’t so lucky. Rain would still be welcome!

After 8 straight days of work, we took last Tuesday off and left the mountain for a while. We walked all over Manitou Springs and shopped the tourist shops, including, of course, T-shirt and ice cream shops. We ate at a little restaurant right along Fountain Creek.

Just off the patio, we found a couple of interesting bike sculptures. We watched several children climb on for a photo.

Manitou Springs is a fun place and we always try to go into a store called, I think, the Cotton Patch. They sell women’s clothing, although I didn’t buy any this time. The owner is originally from Kansas and we always enjoy visiting with her. One of the stores which mostly sells jewelry has a desk set up for anyone to type whatever they’d like on an old fashioned typewriter. This one was even before the ones I learned on, even though they too were manual and not electric.

Back home in Kansas, we have great news from baby Rae. Jordan said late this week that she weighed 4 lb. 12 oz. and has progressed out of the NICU into a special care unit where they have a private room and can hold her much more. I think she’s Daddy’s girl! Marc was whispering World Cup soccer updates in her ear, I’m sure.

Rain showers have brightened some of the nature around us. I’ll leave you with a couple of shots I particularly liked.

 

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And the good news is…

It’s nice to have good news to tell! Things at Golden Bell are mostly going pretty well and the weather has been beautiful, although we’d love to see RAIN. More of our volunteer cronies are showing up regularly. It’s so much fun to reconnect with people we’ve known for several years now as they come from all over the country. The camp nurse and her husband, former Coloradans,  live in Alabama now. One couple who just arrived came here from their winter stay in Florida after a medical treatment delayed them. Another fellow came in this week from California and his wife will follow later. Still more Kansans will be on their way this week. They just got back from a trip to Europe and a close friend passed away before they got headed this way. We look forward to all of them!

Raymond has good news, too. When we left New Mexico, he was still in ICU at Memorial Hospital but they thought they were going to transfer him to a regular room. That didn’t happen as soon as they thought, but he did (eventually) make his way to a regular room. Try as they might, the social services group there could not find a single facility that would accept Raymond after discharge, even the nursing home he had just come from in T or C! We’re not sure what strings they had to pull, but he is now on the 6th floor of the hospital and they are taking him across the parking lot for radiation 5 days a week and chemo one day. We’re not asking any questions! We’re just grateful that he isn’t having to endure many hours driving each week. When we talk to him, he says he’s “hanging in there” and we’re glad for that, too.

We also had good news from granddaughter Jordan this week about baby Rae. She weighs 4 lbs. 4 oz. now and even after receiving four vaccinations this week, she’s still breathing on her own. Still on oxygen, but I’m sure they’ll be weaning her off that soon. She was 2 months old on the 25th and Jordan says she may be moved to the less intensive care part of NICU very soon. We pray that will happen!

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There is a bit of “bad” along with the good news this week, though. There is a very active forest fire within about 20 miles of us, just a few miles from the Florissant Fossil Beds, one of our favorite places in the area. At present, it is not contained but we are not in immediate danger. Believe me, if the sheriff tells us to evacuate, we’ll be building air to do so as quickly as possible! The campground here is under burn restrictions and as of yesterday noon, absolutely no outdoor burning is permitted, even camp stoves and grills. That’s no problem for those of us in RVs, but the tent campers who arrive planning to cook their meals outside are having to regroup. I haven’t heard of cancellations, but I expect them this week since more than half of our sites are usually filled with tent campers and this is 4th of July week.

Happy Independence Day to all!

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A week of ups and downs

Both figuratively and literally, this has been a roller coaster week. First thing was that we showed up for Raymond’s first radiation treatment, only to find out that his treatment schedule had been pushed back a week, so a 150 mile round trip for nothing. On Tuesday, we met with the pharmacist who is in charge of Raymond’s chemo, which will start at the same time as radiation. Things were looking up!

Then it seemed like the bottom dropped out. We got a call from the nursing home in the wee hours of Wednesday morning, saying that Raymond had been taken to ER due to low oxygen levels. Duh! We’d been trying to tell them! A couple of hours later, they called back to say that he was doing better. So next morning when LeRoy got to the nursing home to see him, they said no, he was in the hospital at Las Cruces! So I guess “better” is relative, since he was in ICU on a ventilator. First they said he had an infection in his stomach feeding site, along with pneumonia, but antibiotics do wonders. The ICU at Memorial Hospital is filled with caring nurses and other providers, several of whom remembered him from his stay last month. By Thursday, he was greatly improved and the plan was at that point to release him to the nursing home on Saturday. They thought he should probably be okay to begin radiation and chemo as planned.

We were encouraged enough to decide to head for Colorado on Friday, just a day later than planned. We still haven’t heard from either Raymond or the nursing home to say that he is there but we’ve left messages. Surely we’ll hear more later today.

That’s when the literal ups and downs began. LeRoy had been debating about whether or not to go over Raton Pass, since Liberty pretty much faints at the sight of a mountain. Other bus friends said it wasn’t so bad, so we decided to go that way. Strategically, LeRoy planned to drive all the way to Raton, NM the first day so that we could begin the drive up the pass while both the engine and weather were cool. It’s unfortunate for buses (and the people who get stuck behind them) when road construction has to be done in the last mile before the summit! I drove the car behind LeRoy so it wouldn’t tax the engine too much and I think the lowest speed it got to was around 20. Once up that pass, we hooked back up in Trinidad, CO and it was easy going until Ute Pass west of Colorado Springs. We unhooked again and this time, I pulled the tow dolly with the Escape. I was beginning to wonder when I saw the speed drop to 18, but then the road leveled out and we got back up to speed.

After lunch at Woodland Park, we made it on to Golden Bell and into our site. Backing in last year was when we got a hole poked in the back corner of Liberty, but this time parking was uneventful. The ups and downs for last week over, we intend to rest up a bit before hitting the ground running with breakfast at the lodge at 7:30. We won’t be camp hosting these first few weeks, so we’re ready for whatever new adventure Charlotte, the volunteer coordinator, throws at us.

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Another change

Early last week, Raymond told us that he doesn’t need us to stay once he gets into a routine of treatment. He’s happy in the Sierra Home Health in T or C and since they are scheduling and transporting him during the radiation and chemo, we feel released. Golden Bell is still willing to have us come and we plan to leave New Mexico on June 14.

Last week we were in Las Cruces more than once. The first was a surprise visit with Phil and Pat Cox, who were on their way from their home in Arkansas to visit in Green Valley, Arizona. We’ve known Phil since church camp years. We attended the same church in Wichita before we even had kids and then we lost track of him for a while. Good ole Facebook brought us together again! It’s so much fun to spend time with them. We met at a cafe with patio seating since they brought their puppy along. She’s hiding under the table!

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Raymond had an appointment with his oncologist the same day as his PET scan, so it was a long day. His appointment was at 1:40, but it was 3:00 when he got in and the scan appointment was about the same time. Everyone was accommodating, so it all got done, but he wasn’t back in T or C until 6:30. The next day he had a PICC line inserted, also in Las Cruces. Tomorrow he has radiation at 9:45, which means leaving T or C about 8:30. Several days he has more than one appointment and the scheduler thinks it would be easier on Raymond to go down, come back and rest a bit before taking the trip again. I’m not sure how that’s going to work but with a lot of prayer, I’m sure it will.

Another prayer concern is that his breathing is sounding very labored and his oxygen levels are a little low. Pneumonia is always a concern, but we’re hoping to talk to his doctor tomorrow and maybe have more news.

On a brighter note, Rae is growing like a weed. She now weighs 2 lbs. 14.5 oz., closing in on 3 pounds! This picture shows her in a hat with a bow like the sweet little girl she is. They haven’t had a hat on her before that we had seen and the blanket covering her is an addition, too. I’m sure Marc and Jordan are very anxious for her to be sleeping in her own crib at home! Sweet dreams, precious Rae!

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The Usual?

Each week for more years than I can count, my sister Florence Marie, and before that her husband Glenn, has written a letter for all the family on both sides. LeRoy gives her a hard time because, in her day by day recounting of the week, she says that the activities of certain days were “the usual”. I’ve been thinking about that this week, because very little in our lives these days is “usual”. Oh, we still have to do laundry and clean the toilet, but beyond that we just have to be flexible.

I’m writing from Truth or Consequences today. We moved up here on Thursday because Raymond was transferred to the nursing home here. While social services at Memorial Hospital had been trying to find a place there in town for Raymond to stay during treatment, no such place was found. Most places would not accept him if he was going to be in treatment, period. Others would not transport him the short distance back and forth because they would not be reimbursed. I’m not sure what the difference is but Sierra Home Care in T or C was willing to take him AND transport him more than an hour each way, 5 days a week for 7 weeks! To say it is not ideal is an understatement. Raymond is nearing 81 and that ambulance time will wear him out even without the toll the treatment will take.

Enough about that unusual turn. Lest you think that all we do is hospital/nursing home related, we took some time yesterday just for ourselves and made a road trip in the car to Pie Town. Sometime early in our retirement, we took the road through that quaint little town and just by happenstance, stopped at the restaurant on the east end of town, Pie-O-Neer.

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At that time, you could buy lunch there along with several varieties of pie. Kathy Knapp is the owner of what is now strictly a pie shop and we enjoyed catching up with her again. If you don’t consider pie to be lunch, you can go down the street for a burger and come back for your pie fix. Over the years, Kathy and the restaurant have become famous thanks to an award-winning documentary by Jane Rosemont called The Pie Lady of Pie Town and people come from all over the country to sample the pies. While we were there, a couple from Idaho came in with their grandson. For us yesterday, pie was lunch and between the two of us, we had 5 (!) pieces! There were a couple of new ones in addition to our favorites from the past, New Mexico pie (apples, green chilies and pine nuts) and a blueberry pie with cutout pastry stars for a top crust. We call it Starry starry night, but it may be Midnight sky.  Whatever you call it, it is luscious! There are too many to show here, but you get the idea.

We also sampled new ones, an oatmeal pecan pie that was amazing, an apple-cranberry that was worth tasting and my absolute new favorite, a chocolate chess pie with red chilies, sort of like a fudgy brownie in a crust. Since LeRoy doesn’t eat chocolate, that one was all mine!

Last fall, Kathy released the recipe for the NM pie and I made it when our son and daughter-in-law came to Yuma, but I didn’t have Kathy’s crust recipe. Well, I do now! Kathy sent me to the kitchen and the crust maker herself wrote it out for me. When you combine lard and butter, how can it not be wonderful?

We stopped to check out all the historical markers along Highway 60, or as Kathy calls it, the Pieway. This is interesting country and women played an important part!

 

One interesting sign miles from any town pointed us to the Baldwin Cabin Public Library. Sure enough, up the little dirt road was this building. It wasn’t open when we were there but I’m sure it is well loved and appreciated by the people who live in the area.

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Another large, I mean REALLY large, part of the landscape along the way is the Very Large Array. I’ve written about it before, but this time we saw so many more of the dishes spread in multiple directions. There are 27 of them in a Y shape. In case they just look like satellite dishes to you, each of them weighs 230 tons and measures, I believe, 82 feet in diameter! That’s two of Liberty parked end to end with two feet to spare! They sit on a railroad track and can be grouped close together or spread out over several miles.

We had a very enjoyable time, even in hot weather.

The latest word from our tiny great-granddaughter Rae is that at just past 5 weeks, she has doubled her birth weight and grown 2 inches. She weighs 2 lbs. 10.5 oz. and is 14″ long. I could tell quite a difference in the picture taken Monday (picture 1) and the one we got Friday (picture 2). Her arms are really filling out and she ditched the ventilator tube in place of a CPAP, at least for the time being. Jordan says with the CPAP, she can hear her cries and she lets them know when she isn’t happy! Holding Mom’s hand is calming, though.

We’ll be back in Las Cruces for an appointment with Raymond’s oncologist this coming week and maybe we’ll get into a “usual” routine again one of these days.

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More on Raymond

We spent several hours this morning getting ready for Raymond to go to his consultation with the radiation doctor, then going with him to that appointment. LeRoy and Raymond’s cousin, Phyllis Mosher, arrived yesterday and was here for the doctor visit. It really wore him out, but they were able to make the mask and mark the tattoos for radiation. Seven weeks of radiation, five days a week will begin on June 11. We have been instructed about what he can and cannot do during radiation, but some of the things are not applicable since he is fed and hydrated by tubes. He gets nothing by mouth except small amounts of ice chips.

One bit of information that just slipped out as though we already knew: he has MRSA, apparently in his trach! You’d think someone would have told us that rather pertinent information! Well, we know now, and will take all the precautions necessary.

This afternoon, LeRoy and Phyllis were in Raymond’s room when the chemotherapy doctor came. He says that the information we had on the type of cancer (squamous cell carcinoma) was only partially correct. Raymond really has spindle cell carcinoma, a highly malignant variant of squamous cell that makes up 2% to 3% of all laryngeal cancers. In the coming days, we will find out about treatment for it, but they cannot treat it while he is in the hospital. It all comes down to what insurance will and will not pay. And now you know as much as I do.

We would appreciate prayers, first of all for healing so that Raymond doesn’t have to endure all of this, and secondly that his housing and treatment will be sorted out by social services from the hospital.

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