Ouch!

Our last day at Williamsburg (Oct 19) featured great weather and great rides at the Busch Gardens amusement park. Next morning we were up at three (that's right - 3:00 am) and off to the airport. The trip home was uneventful and we found all well when we got there, but by Saturday evening the condition of my back had rapidly worsened. The strongest medicine I had (expired Lortabs) wasn't strong enough to get me a good night's sleep, or any sleep at all for that matter. I literally stood up all night because it was the only way I could get comfortable.

Sunday the back pain just got worse throughout the day so finally I talked to the weekend on-call doc at Utah Cancer Specialists, who said I should go to emergency. So, late that night Laraine took me to the ER at Intermountain Medical Center, where they did the usual blood tests and and a CT scan, neither of which revealed anything unexpected. They first gave me Percocet, which did nothing, but then gave an IV dose of Dilaudid, a concentrated form of a morphine, and that really hit the spot. I could feel its effect almost immediately, as the pain drained away completely.

I don't know what I was thinking at that point, but we decided to go home, armed only with a prescription for Percocet, which we already knew didn't work. Monday morning I saw Dr. Nibley to talk about cancer treatment alternatives, but he also gave me a prescription for a Fentanyl pain patch. I next saw Dr. Avizonas, a radiation doc, to schedule radiation treatments for the myeloma mass on  my backbone, but she also gave me a prescription for oral Dilaudid to help with the pain.

Despite all the prescriptions I had, by Monday night the pain was at the top of the chart again, so I called the on-call doc again, and this time he admitted me straight into IMC as an inpatient. During my stay, which lasted until Wednesday afternoon, I met with several more doctors to figure out a pain management approach that I could use at home--one that didn't require an IV.

Meanwhile, on Tuesday, I did the first of ten daily radiation treatments there at IMC. The actual radiation lasts only a few seconds, and cannot be felt at all, but lying on the hard, flat table hits my nerves, or the myeloma mass, or something, in a way that causes excruciating pain, about an 8 or 9 on the pain scale. I just hope it all does some good.

So next, on Thursday, I consulted Dr. Jane McPherson, a pain specialist with the clinic, who I had met with last fall concerning neuropathy. She helped me consolidate the various prescriptions I had received during the past week into a single plan, upping the dose on a couple of them. With a little experimenting with timing and dosages I made it through the weekend, trading off pain for a drugged up feeling.


Friday we met with Dr. Zangari, head of the myeloma program at the Huntsman Cancer Institute, to consider getting a "formal" second opinion from him. We had somewhat conflicting aims: he wanted to do a full "staging"--two days of testing--before even discussing the matter. I just wanted to talk about his basic philosophy toward myeloma treatment before investing in the two days of treatment. To make matters worse I got quite nauseated while we were talking, and his staff had to give me IV anti-nausea and pain meds and hydrating solution. But after nearly two hours I think we came to a meeting of the minds. We're going to go ahead and start with the full staging as soon as we've completed the radiation treatments.

Williamsburg

Just a quick update to let you know all is well. We had a very pleasant stay with our son David and his family in Shaker Heights. Saturday we all drove to colonial Williamsburg in Virginia; the kids are great travelers, partly because their mom Cicely prepares lots of things for them to do in transit. Sunday we attended the Williamsburg Ward, where to our surprise, the main speaker was Brent Peterson, a former neighbor on Falcon Park Circle, who is now a clinical psychologist.

Here in the Williamsburg area, we have toured Colonial Williamsburg, the Colonial Parkway, Shirley Plantation (a still-working farm that dates to colonial times), and part of the Jamestown exhibit. In addition my son David and sons-in-law Brandon and David got in 18 holes on a beautiful course here at the Marriott.

Overall I have felt good. The golf gave me some serious sacroiliac pain, probably due to bone weakness from the cancer, plus my having not played for over four years. But a night's sleep and some strong medicine took care of that. I continue to have chronic pain in my side, ostensibly due to the myeloma mass on my backbone, and I will begin to get that zapped starting next Monday. I'll see you after that.

Capitol Reef

Monday October 1 we did visit with Dr. Nibley to discuss the results of the MRI. He agreed with Dr. Hales that the small mass showing in my spine answered to the various symptomatic pains I have been having. He added that there was a risk that the mass could grow into the spine and impinge on the spinal cord, causing paralysis of the lower body. He was quite anxious that I receive radiation treatment to shrink the mass.

As to my main treatment he proposed two alternatives. One would be to drop the current Revlimid-Dex regimen in favor of carfilzomib, newly approved by the FDA. It is very much like the Velcade (bortezimib) that I previously received except it rarely causes neuropathy.

The other alternative would be to enter a clinical trial that Utah Cancer Specialists is a part of, and which is testing a new therapy in conjunction with Velcade. When I received Velcade last year it was effective in driving down the myeloma but caused severe, painful neuropathy. Since then a way of delivering Velcade has been found that reduces the incidence of neuropathy: an injection under the skin instead of intravenous, and once a week instead of twice a week.We'll decide between the alternatives when I return from Williamsburg.

For a long time I have been considering getting a second opinion, in which I have been strongly encouraged by my family and by my insurance company's "customer advocate".  Dr. Nibley seems to have a specific approach, but there are other approaches in the field. I have contacted the Huntsman Cancer Institute about getting that second opinion. The trouble is, based on the material I have received from them so far, Huntsman's approach may not be all that different from Dr. Nibley's. I have read about doctors in the east and on the west coast that have a different approach but there may not be anyone in the intermountain west that I can go to. I need to do more research.

Meanwhile Laraine and went camping this past week with my brother Steve and his wife Elaine. We spent three days and nights at Capital Reef National Park in southern Utah. We stayed at the Fruita campground, the only one in the park. It is so named because of the orchards in the area, planted by early settlers and still in operation today. We had a great time; the weather was perfect and the autumn leaves, especially the aspens, were glorious beyond description. I was sick with indigestion one day, but it wasn't too bad.

This past Monday we visited with Dr. Avizonis of IHC's radiation oncology group. She took the time to actually show us the MRIs and how the myeloma mass was pressing on my spine. She recommended ten daily treatments of radiation, to begin the Monday after we return from Williamsburg. In the meantime I deal with the nerve pain using pain meds and anti-inlfammatories, mostly at night to help me sleep.

Yesterday we caught our plane to Cleveland, and now here we are at David and Cicely's house in Shaker Heights, enjoying Miles, Faye, and Gwen! We'll all drive to Williamsburg on Saturday and meet up with the rest of our kids.

The MRI

After returning from St. George, I underwent an MRI at Alta View Hospital, at the request of Dr. Hales. I was only able to complete two of three parts of the procedure because lying on my back made it hurt so bad I was twitching uncontrollably. I returned the next morning to complete the last procedure.

Meanwhile, a curious thing happened. Sometime during my stay in St. George the center of pain moved slightly but definitely from my back to my side. And then later on the day of the MRI, the pain subsided substantially on its own, to the extent I was able to stop taking pain medication. Whether it has helped or not, I have been taking it REALLY easy--lifting nothing and avoiding any kind of strain or effort. Sadly, I am getting very little done--some reading and working at my computer--and it's really frustrating. I have so many projects to get done, and so little time. You know how it is. I'm also not exercising, so I have a put on some weight, a lot in fact, and quickly!

Wednesday nights Laraine usually goes to as stake Relief Society presidency meeting (she is second counselor). To make it easier on her, and because it's as good an excuse as any, we go out to dinner on that night, usually for sushi. So for now, Wednesday night is sushi night. Woohoo!

Emily and I read the MRI report when it showed up on my IHC website, but we couldn't make much of it. When Dr. Hales called me on Thursday, he told me the MRI had shown a mass impinging on my spine that was likely caused by the myeloma and was likely causing the pain. He had already talked to Dr. Nibley and they had agreed that I should undergo radiation to try to shrink the mass in order to reduce the pain.

Laraine and I picked up a copy of the lab reports Dr. Nibley had ordered last week. The M-spike cancer marker was 0.3, lower than the 0.4 on the previous report but up from 0.2, where it had been since my transplant last November. The IgA marker was 742, up dramatically from the 416 measured in July. Anything above 400 is abnormal. It appears the myeloma is definitely coming back.

Friday one of Dr. Nibley's assistants called and referred me to the Radiation Oncology group of IHC, located downstairs from Utah Cancer Specialists at Intermountain Medical Center. At my request, she was also able to get my next appointment with Dr. Nibley moved up from the end of October to this Monday (today), in order to act quickly on my rising cancer markers.

Saturday I decided that since I apparently didn't have muscular damage or bone fractures, I would resume normal activities. I worked in the yard and went on a bike ride, both without any ill effects.

Troubling News

The week started and ended well but there was a tough spot in the middle. It began with lunch at the Ho Ho Gourmet with a great bunch of guys I used to work with: Matt Augustine, Gary Lee, Ryan Anderson, and Jared Penrod. We get together about once a month; Dave Moore usually joins us but couldn't make it this time.

Then Laraine and I had a great dinner with my brother Steve and his wife Elaine at the Water Moon in Draper (it must be Chinese week). We planned a camping trip for the week after next down at Capitol Reef National Park.

Thursday was the hard day. We met with my oncologist, William Nibley, and the news was not good. One of the two cancer markers we follow, the M-spike, had gone up to 0.4 after having been level at 0.2 since my transplant last November. The other marker, IgA, was inadvertently not processed by the lab, but I have no doubt it has gone up too. Unlike the M-spike, the IgA has been climbing steadily since the transplant. This means I will probably be switching to a new drug regimen. Dr. Nibley ordered more tests to confirm the M-spike result and pick up the IgA count that was missed, and then we'll meet and re-evaluate in a month.

In addition, my red and white blood counts were down even further. This is caused by the Revlimid drug that I take, even though I had been off it for a week. I do a cycle of 21 days on and 7 days off. The lowered red count makes me anemic and the lowered white count weakens my immune system.

Things got better after that as Laraine, and Libby and her two boys Sam and Max, and I headed for St. George, where we are staying with my brother Mike and his wife Jan. Friday we all took a nice walk on the pathway along the Virgin River. Saturday Mike and I enjoyed a bike ride on the road that leads to Zion National Park, ending up in Springdale, where the rest of the gang met us for dinner at Oscar's. Try it if you're ever in the neighborhood.

Yesterday after the Brigham City Temple dedication, Mike and Jan had a barbecue for other family and friends that are visiting or live here in St. George. Our youngest Aly was down with her husband and some of his family. Also here was my sister Suzanne, her son Brian and his family, and my brother Steve's son Nathaniel and his family--all St. George residents. We had a great evening.

I continue to be plagued with pain in my back, or at least in my ribs. When it first started a few weeks ago, the doctors thought it was a spinal problem, but after reviewing all my past x-ray reports, I think the problem may be in my ribs, perhaps from fractures I've had since getting cancer--ones I didn't even know about because I hadn't read the reports carefully. When we return home to Sandy I will get back together with my primary care doc, Reid Hales, to try to figure it out. It's really been slowing me down.

Lots of testing this week. Dr. Hales, my primary care physician, had me get a CT scan on Thursday, to try to figure out what was causing the pain in my back. Then Friday morning I underwent what is called a skeletal survey, about thirty-odd x-rays of my entire skeleton. This had been ordered by my oncologist, Dr. Nibley, who is also concerned about my back, but also wanted to know if there was any increase in cancer-related damage to my bones. While I was in the clinic, I also got my regular blood tests, and my quarterly infusion of Zometa, an osteoporosis medicine to strengthen my bones.

The result of the CT scan and the skeletal survey is that there was nothing to indicate any source of the pain in my back. I have a little degeneration in the spine, probably due to my age. I also found out I had two fractures that I didn't  know about, in one of my ribs and in my pelvis. Both apparently are healed. My guess is that they were caused partly by the damage to my bones from the myeloma, but I have no idea when I got them.

The blood work showed that, as usual, the Revlimid therapy I take has suppressed my immune system, and depleted my red blood cells, perpetuating my anemia. I am off Revlimid this week, which is part of my regimen: 21 days on and 7 days off. I will meet with Dr. Nibley this week to decide what to do differently, if anything. As far as the cancer markers, which indicate how active the cancer is, that test has to be sent out to another lab, so I won't get those results for a day or two.

Every Friday morning I take dexamethasone, a steroid that is part of my cancer treatment regimen. I noticed two Fridays ago that I had no back pain all that day, after taking the "dex", but the pain returned part way through the next day. This last Friday, however, the pain went away and never came back. So I'm guessing the dex has somehow cured the cause of the pain, or at least masked the pain. Either way, I am really grateful. The pain was very debilitating; it gave me real empathy and compassion for those who suffer chronic back pain.

I just got a great call from my good friend Lee Taylor, from my graduating class at Springville High. Lee looks after all of us and keeps the class together, a "calling" he selflessly took upon himself years ago and has carried out faithfully ever since. He travels widely and always makes a point of visiting any class member who happens to be in his path. He's a great guy.

I'm headed to St. George this week to see my brother Mike and my sister Suzanne and to see "Aladdin". My next post will be from there.

I know the best post is a short post but I have some catching up to do. Back in April, I was just getting over the RSV-pneumonia-bronchitis adventure that put me in the hospital when I hit the next speed bump. Laraine and I had just gone to Marriott Mountainside resort in Park City for a week of fun, relaxation, and just getting away from our chores. Sunday was great; daughter Aly and her husband Dave joined us and we went to Church in Heber, where we ran in to my nephew Brad Allen, who is on the high council there. We had a lovely dinner and evening.

Then, early Monday morning I awoke with vomiting and diarrhea which lasted about 18 hours. Apparently I had a good old GI (gastro-intestinal) infection, commonly known as stomach flu. I don't know how I got it.  At any rate, by the end of our week I was doing OK, but I did seem to have aftershocks for several weeks. Since my transplant, I do get indigestion and sometimes nausea, much more than before.

The next adventure was traveling to Shaker Heights, near Cleveland, in late May through early June to visit our son David and his family. It was a great trip as we got to know much better our grandchildren Miles, Faye, and new baby Gwen, and participate in many fun activities. We watched Dave graduate from medical school (woohoo!) and took part in blessing baby Gwen. The trip was marred just a little by bouts of bad indigestion and nausea, about every two or three days. The other bad thing was when I lifted a big bag of soil at an awkward angle. I thought I had pulled a muscle, but I found out later I had injured my back. On the plus side I did feel strong enough to exercise an hour every day, alternating between running and biking. 

After our two weeks in Shaker Heights, Dave, Cicely, the three kids and the two of us packed into the family van and headed for Orlando. We took two days, staying overnight in Charlotte, North Carolina. It wasn't as bad as you would think; the kids were great to travel with. We had a great time at Disney World, spending four days in the various parks and resting a couple of days in between. At the end of our week we flew home to Salt Lake and the kids drove back to Shaker Heights.

Aside from intermittent nausea, I felt pretty good the whole time with the kids, but apparently I caught something from somebody somewhere, because the day I got back I got really sick with chills and fever and was down for several days. The doctor put me on antibiotics and after a few days I was OK.

At the end of June, we sold our ancient van (1998 Windstar) and bought a used, crew-cab pickup (2006 Toyota Tundra) from one of our neighbors. For our first road test of the new truck, Laraine and I took the tent trailer to Great Basin National Park just across the border in Nevada. We camped at 10,000 feet and had a great time--no health problems. We hiked to see 3,500 year-old bristlecone pines, and toured Lehman Cave. If you haven't been there, you should go.

The first week of August brought the extended Cain family annual camp-out at Monte Cristo, above Huntsville, where we have camped the last few years. Some of us spent one day driving around northeastern Utah and parts of Idaho and Wyoming, tracking my brother Mike as he trained for the upcoming LOTOJA bike race. As usual we spent Friday of the camp week at Pinedale Reservoir, enjoying our son-in-law Brandon's boat. Fortunately, I felt pretty good the whole week.

Between adventures, I spent the summer working in the yard, trying to simplify the landscaping to make it easier to maintain and make it more attractive to potential buyers when we sell our house some day. One of the projects was to take out our large vegetable garden and replace part of it with grass. My neighbor had some leftover sod, so I went to work putting it in. I usually work two or three hours in the yard before noon and then quit for the day; that's about all I can stand in my condition. But for some reason (or lack of reason) I worked all day for several days in a row trying to finish the sod. In addition, the sod was very wet and consequently very heavy. Result: I now have an injured back and chronic back pain. The multiple myeloma may have weakened my back and predisposed me to back problems.

Speaking of multiple myeloma, I continue on the maintenance therapy, consisting of a daily Revlimid pill for three weeks, and then a week off. As I have mentioned before, the Revlimid makes me anemic and lowers my immune system, along with fighting the cancer. At one point, I had to take an extra three weeks off because my immune system was dangerously compromised. About three months ago, Dr. Nibley added a weekly dose of dexamethasone pills, a powerful steroid that fights the cancer, but that also has many side effects, including substantial muscle atrophy. The plus side is that on the day I take it, I have no back pain.

As to the cancer itself, we're getting a mixed message. One of the markers, the M-spike, has remained steady at a low level, which is good. On the other hand , the IgA measure has risen steadily since my transplant and is now in abnormal territory, which is not good. I will undergo some more tests later this week and meet with Dr. Nibley the following week, to try to figure out what is going on and what to do next. We might change medications. I have also considered getting a second opinion, probably from the Huntsman Cancer Institute, just to get another viewpoint.

On church matters, I was released from the bishopric just before my transplant and didn't have a calling for a while afterward, but now I am teaching gospel doctrine and serving as a stake auditor. Laraine has just been called as a counselor in the stake Relief Society presidency.

In the meantime, Laraine and I have spent this week with my brother Mike and his family at the Ideal Beach Resort at Bear Lake. Our daughter Libby and her boys also joined us for a couple of days earlier in the week. The main point of the trip was Mike's participation in the famous LOTOJA (Logan to Jackson) bike race, which took place yesterday. Mike's wife Jan, their daughter Jessica, my sister Colleen, and Laraine and I had a great time providing support to Mike during the race. Driving through the most beautiful scenery, we met Mike at several pre-selected feed zones along the route to replenish his supplies and otherwise give aid and comfort. Mike did great, finishing in a very respectable 12 hours and 28 minutes, especially given his age of fifty-seven.

I promise not to wait so long until the next post. Our next big adventure is a trip to colonial Williamsburg in October, but I will get back to you before that.