September 5, 2019 Finally Leaving Little Rock, Arkansas

On the Road Again !

The image above shows some of the very colorful landscaping in one of the older, more established neighborhoods in Little Rock. I was pleasantly surprised by the many older neighborhoods all around the city, almost all shaded by massive live oaks and most beautifully landscaped.

Today, September 5th, I had my checkout appointment with my oncologist at UAMS and received permission (and a whole lot of medical instructions for the upcoming months) to leave Little Rock,  Arkansas, after the longest, and most grueling five months of my life. The Bone Marrow Transplant that was originally estimated to take roughly 3 months was extended in my case by a couple of unfortunate complications, but at last I am done here, at least until I have to return for next April’s checkup.

The intense chemo and extended hospital stays resulted in my feeling and getting around like an old man. Well, I guess I am an old man, just never felt like one before. Considering that I left the hospital almost two months ago using a walker and was barely able to make it up the four steps into my motorhome, I guess I can see that I am actually slowly, and I do mean slowly, regaining my strength, but I still have a long way to go. My Multiple Myeloma is not in total remission so I will be taking what they term a “maintenance” drug routine for the foreseeable future and will have to have regular blood testing done to monitor how quickly this horrible disease comes back, and unfortunately, it always does.

In the meantime I will be heading north back to New Hampshire next week with my new Chevy Equinox in tow. My weakened state and brittle bones meant I had to ditch my previous toad setup of my old reliable Prius on a tow dolly, just can’t risk pushing the tow dolly around anymore. The Equinox is one of the dwindling few new cars that can still be flat towed, four wheels down, and so far, I am really pleased with the vehicle.

I hope to get some nice New England foliage shots and indulge in some Ipswich  fried clams (at Boardman’s or The Clam Box), some Maine lobsters, and maybe even some fresh Swordfish, three favorite foods that I have gone without in the last six years out west. Hope to visit some of my old photographer friends around Lebanon and Hanover, NH, and then just may spend some time with my little sister, who generously donated almost four months of her life to act as my caregiver down here in Little Rock, putting up with the intense heat and humidity (and me), and was simply invaluable to me, especially during some of the dark days I spent in the hospital. Don’t know if I would have made it without her.

So, I will soon start doing some blog entries once again, taking photos as I used to, and eventually making it back down to Florida for the winter.

Stay tuned!

September 14, 2017 Bend, Oregon

Sunrise, the Palouse, Washington (24" x 16" Acrylic on linen)
Sunrise, the Palouse, Washington (24″ x 16″ Acrylic on linen)

Still Just Killing Time in Bend

Yesterday was the start of Round Five of my chemo treatments, just one more round to go after this one and maybe I will be able to hit the road again by the end of October and head south for the desert, since Florida and the coast of Texas are now out. I had planned on returning to Rockport, Texas and Goose Island State Park, one of my favorite winter stays, where I  spend my time shooting Whooping Cranes and other birds, but I’m sure the hurricane has made this and  all of my favorite stops along the Texas coast ( such as the beach at Aransas Pass ) something I need to pass on this winter.

So, not sure where I may head but am sure I will eventually end up going back to the BLM areas around Yuma and then maybe on to Tucson, an area I have only visited once before and that was back before retiring, so I didn’t get to explore that area thoroughly.

Am continuing my attempts at acrylics and just finished the painting of the Palouse in spring, as seen from the top of Steptoe Butte. As you can see from the photo of that painting at the top of this post ( you can right click on it to see a larger version ), it didn’t come out too bad, every painting presents me with an opportunity to learn a bit more about these acrylics and this one was no exception. Am beginning to figure out how to blend a little better with these paints as there was a lot of blending to be done on this painting. One of the nice things about staying here at the Family Stay Area at Saint Charles Hospital is the free Wifi signal from the hospital. Not having to worry about my $10/GB Verizon signal, I have discovered  a ton of uTube videos on acrylic painting lessons, and, while most are not all that great, mostly because I am looking for realistic painting styles, there are several that have been quite helpful.

Having little else to do to combat boredom here, I am grateful to have resumed this intense interest in the challenge of learning how to master these acrylic paints. I have to stay here to have these continuing chemo treatments but the treatments themselves, including blood draw, oncologist visit, and infusion treatment for the one drug that is administered via injection, takes only about an hour and a half one day a week. That leaves me with most of the treatment day and all of the other six days to find something to do. Bend is a very nice little city with wonderful surrounding mountains to the west, but extensive forest fires have raged in the area all summer and smoke is everywhere, leaving me with what would have been a debilitating case of cabin fever if not for this resurrected interest in painting. It seems odd to not be out photographing birds and other wildlife after doing so almost every day for the past 4 plus years, but the only use my photo gear gets these days is to take a shot of my latest painting to post on this blog.

But it now does appear that I will be able resume travel, and wildlife photography sometime before winter, and for that I am grateful.

Myeloma Update

Not being able to come up with a “caregiver ” to assist me for a couple of weeks after the hospital stay for a bone marrow transplant has left me ineligible for that transplant procedure, the best hope for an extended period of remission for this relentless disease. However, my oncologist continues to insist that he has never been completely sure that a transplant would be best for me anyhow, saying I may have an equally decent chance of remaining in remission for at least a couple of years or more on a maintenance drug routine. With or without a transplant, this cancer always returns, it is just a matter of how long one can stay in remission and thus off the most powerful drugs ( that eventually take a toll on the body ) that gives you the best chance at a longer survival and a better quality of life living with the disease.

Every thing I read, and he agrees, at this time says that the transplant procedure is the first line of defense in terms of length of remission. However the procedure is no walk in the park and there are some, though still relatively small risks of complications that can be life threatening. Recovery from the transplant can take from a couple of months if you are are lucky, to as much as a year, it varies greatly from patient to patient. And often there are lingering problems from the procedure that never go away such as loss of taste or continuing  fatigue. He points out that some recent studies have shown that the difference in length of time in remission between transplant patients and those going on a maintenance drug regiment only is just a matter of nine months to a year. Since the procedure  essentially robs you of the first three to as much as twelve months of that first year of remission, some oncologists are beginning to lean towards no transplants for some patients, especially for those that have had a robust positive response to their initial drug therapy. And, of course, that is a category I happen to fit in.

After reviewing blood work test results, in yesterday’s conversations with him, my oncologist says he remains amazed at the continuing strong  positive results of this treatment plan. He says everything looks good and progress continues to be made in all realms to getting this thing into remission. He definitely plans to finish up this course of treatment after one final, sixth round and switch me over to an oral maintenance regimen, at which time I can leave the area and resume my travels. I will be required to have monthly blood tests at a hospital or medical facility wherever I happen to be, with the results emailed to him so he can monitor my progress and be able to make whatever changes to the regimen  that may be required. As long as I can be reached via email, he has no problem with my being off wandering anywhere and he will be able to keep up with me via email. He states that he would anticipate no new problems arising during the first two or maybe three years ( with no guarantees of course ) and that when new problems do arise, he says at current, there are eight or nine alternate drug cocktails that can be implemented to get the disease back under control.

But, and this he is most optimistic about, there are so many new, almost daily, updates on treatment and even possible cures for this cancer, that as long as a patient is able to remain alive, there are new ways of combating this coming down the pipeline, the most encouraging, being new T-cell therapy. So, of course, I had to go on the internet and Google T-cell therapy. The links below are a couple of results of this search, interesting reading if you have the desire to do so ( and it spares us from having me attempt to describe exactly what this is all about ),

https://www.cancer.gov/about-cancer/treatment/research/car-t-cells

and

https://www.seattlecca.org/treatments/immunotherapy/immunotherapy-facts/t-cell-therapies

Guess that’s about it for now. Weather here has begun to moderate and turn toward cooler autumn temps, actually is quite comfortable today and is supposed to drop to forty degrees tonight, my kind of weather, still patchy smoke from the fires though.

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August 31, 2017 Bend, Oregon

"Teton Elk Skirmish" Acrylic on Canvas 18" x 24"
“Teton Elk Skirmish” Acrylic on Canvas 18″ x 24″

Sitting in the Smoke in Bend

Smoke from the fires around Bend have finally made the air a little nasty here in Bend. Daytime temperatures remain stubbornly in the 90’s week after week,  supposed to hit triple digits ( again with smoke ) this weekend, though thankfully temps do tend to drop to comfortable levels at night.

I continue to pass the time trying to figure how to paint with acrylics, as you can see from the image above. Still frustrating for me, I repainted the foreground in this painting about six times until finally settling for what you see.

Myeloma Update

Yesterday I had the final week of round four of my chemo treatments. Fortunately, still no nasty side effects to all these drugs and blood tests continue to show positive results. My trip last week to Portland’s Oregon Health and Science University Hospital for my transplant consult was a bit of a disappointment.

Traffic and access to the facility was a nightmare as I had been warned and the aged facility did nothing to inspire confidence. The myeloma specialist I had been assigned was young and had only been at the hospital two months, also doing little to build my confidence that this was the right place to be.  I also spoke with the nurse coordinating the transplant procedures.

However, although it appears I would be eligible for the transplant despite my age, it turns out I probably will not be able to be admitted for the procedure because of my lack of a ” caregiver ” to assist with the post procedure recovery period. The transplant leaves one in a very diminished, vulnerable physical   state, and after the procedure the patient stays in the hospital for the initial two weeks, then is released as long as they can stay close by the hospital and have a 24/7 “caregiver” to stay with them for another two to three week period until the patient is recovered and strong enough to take care of themselves. This person provides the recovering patient with transportation to and from appointments, does shopping and cooking as well as household chores and is on hand to contact the doctors if anything goes wrong during those first couple of weeks out of the hospital.

This “caregiver” is normally one’s significant other, not a professional, and my lack of such a person makes me ineligible for the procedure. Since I can travel and could have the transplant done anywhere, I checked out the “caregiver” requirements of other facilities and found that it appears to be a universal requirement. So far I have not been able to find any paid professional caregivers for hire and, even if I did, probably could not afford it since insurance doesn’t cover this type of expense. It appears my best opportunity for long term survival is probably going to go by the boards.

As it is, my oncologist is still kind of up in the air as to whether I should have a transplant or should just go on a maintenance drug regimen since I have responded so well to the chemo treatments to this point. He is consulting with a couple of myeloma specialists in Seattle to come up with a possible alternate program for me that would not involve the transplant procedure. Again, I have to just wait and see. I am now scheduled for two more rounds of chemo, moving my move out of Bend date to early November.

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August 18, 2017 Bend, Oregon

My Backyard or the View From My Door
My Backyard or the View From My Door

Heading to Portland and Hospital Wildlife

Just a quick post to let you know I’m still around.

Today I make the 175 mile trip to Portland for my first visit with the myeloma specialists at the Oregon Health and Science University Knight Cancer Institute Center for Hematological Malignancies Clinic. That’s a mouthful. Yesterday I started my fourth round of chemo here in Bend and my oncologist figures that with the continued good results that perhaps the process can be speeded up a bit and so the referral to OHSU and the specialists to see where, and how quickly, to go from here.

Blood work now shows that my kidney function, that was dangerously close to needing dialysis in May, has now returned to completely normal function and most other indicators show me nearing remission. Of course, that is great news, but the worst part of this, mentally, is knowing that no matter how great this rapid positive response has been, in the back, make that the front, of my mind, I know that this disease always makes a return. Quality of treatment can make that wait for the return a bit longer, but this thing always comes back. Knowing that both of my parents survived into their nineties, and that I have never been sick in my adult life, I always assumed I had another 15 or 20 good years left. Hard to adjust to hoping to survive for five or hopefully a little more years, and that only made possible with continued, and very expensive treatment and drugs. This for a person that has never taken any kind of drugs or medicine , ever.

All right, enough for the kind of post I said I didn’t ever want to write.

Hospital Wildlife

Really not much happening for me here in Bend. The hot 90’s weather has continued on unabated and some days it does get a little smoky from forest fires in the region, but not too bad. And the temps do always drop to 60 or less every night plus the humidity must be very low, because the heat just doesn’t seem that unbearable. not like down south, or even back in New Hampshire when it reached the 90’s there.

Had an interesting experience here on the hospital loop road’s camping spot Tuesday morning at 5:30 AM when I opened the motorhome door and let Sam out to go. I am now in a space with no other rigs on my passenger side, just an expanse of lush mowed grass ( that’s the reason for the strange opening photo above ), and as Sam hopped down the steps, I saw a young Mulie buck lift his head from his early morning grazing and stare at this possible nearby threat. He was no more than twenty feet from where I stood in the doorway and must have figured that ten pound Sam wasn’t anything to be terribly concerned with ( since Sam never even realized he was there ) and that I also wasn’t going to be bothering him, so he simply stood his ground and resumed grazing. Adjusting my eyes to the darkness, I then noticed that he was not alone, two other young bucks were also nibbling grass or clover within 50 or 60 feet of door.

Made some coffee and sat in my recliner gazing out the window in this same direction, as I do every morning, and I noticed yet more deer grazing through the same area, including one very impressive older buck with an antler spread of two feet or more that rose at least eighteen inches or more above his head. Unfortunately too dark to photograph or count points but definitely one of the most impressive Mule Deer bucks I have encountered at such close range. In all, this in-city bachelor herd numbered seven or eight animals and lingered around for close to half an hour under the street lamps before heading across the road, not into the surrounding apartment complexes, but into the hospital’s expansive parking lots and towards the main hospital buildings. Amazing what goes on in the early morning hours, even here in the city.

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