October 26, 2018 Bend, Oregon

Mountain Above Bend
Mountain Above Bend

Medical Update

Sorry for the long delay in posting anything on this blog, but as some of you have probably guessed, I had a serious relapse of my Multiple Myeloma. As I have stated before, I did not want this travel/photography blog to become nothing more than a medical update blog, so since I am not traveling and have been confined to Bend for two months now, there has been nothing to blog about, other than health issues.

In late October, while I was staying at South Beach CG on the Olympic Peninsula, I began experiencing extreme fatigue and felt there was something seriously wrong. Since I figured I could make it the day’s long trip down to Bend and the oncologist that saved me a little more than a year prior, I packed up and headed south. I made it to Bend and drove up to a snow park near Mount Bachelor to camp. The following day I drove down to Bend and checked into the Emergency Room at St. Charles Hospital. I remained in the hospital for two weeks, including a three day stay in ICU where I since been told I came close to buying the farm, due to an infection that my nonexistent white blood cells could not fight off. My Multiple Myeloma had returned with a vengence.

My oncologist got me started on a new chemo regimen while I was hospitalized and that has now continued for the last six weeks on an outpatient basis. As was the case last year, I have been able to stay in the 11 space hospital camping area while I go through this recovery process again. This full hookup camping area on the hospital campus is once again, a true life saver.

Today my oncologist told me that I could probably resume traveling sometime around the end of November, and he could arrange for me to receive the last couple of months of chemo infusions at a hospital in a warmer climate. It does appear that I probably will get the cancer back into remission as the last few weeks’ blood numbers look very encouraging. So maybe this blog will resume in it’s former form by the end on November. Here’s hoping!

The Kindness of Strangers

As I mentioned above, when I arrived in Bend, I parked my motorhome in a Snow Park up near Mount Bachelor, about 17 miles outside of Bend. The next day when I drove down to the hospital, I locked Pearl in the bathroom with her bed, toys, water, and food, not knowing if I would have to be admitted to the hospital or not ( though I had a feeling I would be ).

My first concern, when the Emergency Room doctor quickly conveyed how perilous my condition was and checked me into the hospital, was how to get Pearl rescued. The solution turned out to be a Forest Ranger the hospital called who came to my bedside, took my info and motorhome keys, and drove up to the Snow Park and picked up Pearl and then delivered her to the Humane Society of Central Oregon in Bend where she could be cared for until/if  I was released from the hospital. On top of that, on his own, he went to the shelter to check on her two days later and relayed her status to me in the hospital, something he certainly did not have to do, but that was greatly appreciated.

Since the Myeloma had clogged my kidneys once again, I had to undergo treatments in the dialysis unit where they ran my blood through a centrifuge of some kind to filter out the Light Chains, though they did manage to keep me from requiring dialysis thankfully. This took several sessions over five or six days and lasted several hours each day. I can not say enough about how wonderful the staff of this department was at a very trying time for me.

The department head ( Mary) was very concerned about the welfare of Pearl ( maybe a little bit about me also ) and her confinement at the Humane Society, and insisted that she would go pick her up and keep her at her  home until I could take her back … and she did just that, with Pearl ending up staying with her for three weeks. And I might note that Pearl was reluctant to return to life in the motorhome after being spoiled with a fenced yard, being able to sleep in a real bed, new toys, and more pampering than she she ever gets from me. But she has readjusted now to her her prior dull life wth me, though she really looks forward to having Mary come take her for a walk every week.

The Dialysis Unit nurses and doctor were also concerned about my motorhome sitting unattended up in the Snow Park while I was confined to the hospital and asked if I needed someone to go up and get it and drive it down to the hospital and set it up in the hospital camping area. Talk about “above and beyond the call of duty”. Sure enough, two of the male nurses in the unit took my keys, drove to the Snow Park, prepped the motorhome to travel ( raise the jacks, stow the TV and lower the satellite dish, etc. ), and drove the motorhome back to the hospital, backed it into a space and hooked up the utilities for me so that I had a place to go when I got released from the hospital. I can not say enough about these kind folks!

If it weren’t for the freezing temperatures and snow, I would elect to stay here in Bend to complete my treatment, but living in the RV, I do need to get to a warmer climate before the snow does start to fall. I’ll resume some blog posts when I hit the road!

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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