Saturday, May 22, 2010

Celebration of 45 Years of marriage

During the middle of May we celebrated our 45 anniversary on Vancouver Island in Victoria, BC and stayed at the WorldMark Resort. We first flew into Seattle where we were picked up by some friends who live south of Seattle and stayed with them a few days at their lovely home in Bonney Lake. They then drove their car and we all traveled over to Vancouver Island by ferry, leaving from Anacortes.

It was really green and beautiful in Victoria but a little rainy, windy and cold most of the time, normal for this time of the year, I guess. These pictures were taken while I walked early one morning near our Worldmark Resort.

Note that the sign "Welcome to Victoria" was provided by beautiful pink and white English Daisies. See the closeup below.

We went to the world famous Butchart gardens and certainly weren't disappointed. Wish I could transport just a small version of one or two of them to my yard in Heber. . . Sigh. . . Not the cloudy, gloomy weather though. Note the smokestack in the background of the above picture. There used to be a limestone quarry in the area. The Buchart family transformed the big hole left in the ground into the beautiful pool with fountain as you see.
More lovely garden areas. . .I wanted to put my bed underneath a tree and never leave.

The next picture shows a 'bear' formed of moss. We also saw other 'animals'--deer, boar, etc., formed likewise. Very creative.

Though Frank wasn't able to go everywhere in the garden, he and our good friend, Truman had an enjoyable day at the gardens.

Wednesday, May 12, 2010

A light at the end of the tunnel for Jason!

We were so glad to be able to fly to Salt Lake City to see Jason receive his undergraduate degree in Architecture. Frank handled the trip well. The smile on Jason's face as he 'walked' was worth the trip. So many long days and nights away from his little family as he studied and worked on projects. . . Great job! Since he was accepted into the accelerated program for his master's degree, he will only have 15 more months to go, then he will be finished with school in August 2011.

Seeing Kristal and the two little girls was definitely an added bonus. They are a laugh a minute. Kandra and her family and Lance came also and we had a good visit. Check out Kandra's blog pictures and more details. Her little boy, Gavin, (20 months) thought he was at Disneyland when he got on the elevators at our hotel. He didn't want to get off but rather to keep pushing buttons, going up and down, down and up, around and around, over and over.

When we returned from our trip, we stopped in Mesa for another chemo treatment for Frank and a zometa infusion for his bones. Ugh! He decided to split up his Decadron dose from 40 mg all at once to 20 mg two days in a row so it isn't so hard on him. Don't know if it helps or just prolongs the misery. He has a bright red rash on both legs--don't know what that's from. The doctor wants to wait a week or so and see if it goes away on its own. (Maybe the augmentin which he took for a week??) Tomorrow we will go down to Mesa again for more chemo., then spend the night and fly to Seattle for the first part of a week long trip to celebrate our 45th wedding anniversary which was April 16. On that day he had to have a dose of chemo. We scheduled this trip during what we thought was an off week but with his eratic treatments due to low blood counts, fevers, etc. our schedule is off. However since flight and hotel reservations had been made, we told the doctor the chemo could wait a week. As we see it, if we have no quality of life and can't do anything but get treatments, then what's the point??

We will stay near Seattle a few days with friends we met a few years ago on a cruise and then the four of us will travel by car and ferry to Victoria on Vancouver Island, B.C. We've wanted to do this for a long time and are really looking forward to the trip. Hopefully I'll have some nice pictures to post when we get back.

Tuesday, May 4, 2010

Zippety Do Dah. . .what a wonderful day!

After a week of not so fun times, we felt like dancing as we left the doctor's office in Mesa today. As late as last night, Frank was still running a nocturnal fever and we were dreading going in to see the doctor for fear he would want to put him in the hospital "to find out what's going on" or something, not to mention give him another dose of chemo, which totally wipes him out and causes back and leg pain. Since we have plane tickets to Salt Lake City on Thursday, that would have been very sad and ruined our plans. Well, the doctor just said that his labs looked good and to wait until Frank finished the prescription to start chemo again. When we pressed him about the labs, we found that the IgG protein in his blood had gone down from about 2000 a month ago to 1068 this week. Hallelujah! Unbelievably, that is in the normal (great) range!!! In spite of the fact that he had only had two chemo treatments in the past 6 weeks (he should have had 11 in that time). . . The doctor said that it must be due to the chemo he got and I said "or the supplements I give him" :) The doctor said that he and I are a team. I'll accept that!

Sunday, May 2, 2010

So what's going on here really?

So... we came home from the Valley and like a good boy, Frank took his antibiotic, lalalala...He felt fine Friday night and all day Saturday, then that night his temperature spiked again. Not daring to ignore it, we called the doctor in Mesa, got the answering service of course and a doctor (not his regular one) called back, said we needed to change perscriptions, that Cipro wasn't strong enough. So after finding which pharmacy was open earliest Sunday morning (Walgreens in Show Low--45 min. away) we called the doctor back (got another different one) to give her the phone # so she could call in the rx; I made a trip there to pick up it up--Augmentin this time. Hopefully it will do the job. Frank still feels pretty good but will stay home from church to protect himself, mostly.

Just after I got back home, we had another 30 minute blizzard blanketing everything in white! Thirty minutes later it had all melted and the sun was out! Crazy Arizona weather.

Friday, April 30, 2010

No chemo after all

After traveling clear to Mesa today, the doctor didn't want Frank to take a dose of chemo because of the fever two nights in a row. Instead he ordered 2 blood cultures 15 minutes apart from two separate locations and also a urine culture to see if they could find a reason for the fevers. He also wrote an rx for an antibiotic. Other than the fever he has had no other symptoms--no sore throat, cough, aches, etc., etc. Next time he runs a fever, we will definitely call first before we make the trip down.

Thursday, April 29, 2010

Hurray for natural immune boosters:)

Frank is doing better this week. He had a CBC done on Monday so on Tuesday the doctor's office called and said his white counts had gone up and wanted us to go down to Mesa for a dose of chemo. We were already on the road so that worked out well. The doctor said he doesn't have to have labs so often anymore--less needle sticks :)) and they've reduced his dose of chemo so that's g-r-e-a-t news! The doctor feels he is responding well to the treatment. He seems to be tolerating it pretty well although last night he suddenly felt like someone had pulled a plug and drained all his energy like a deflated balloon; he also had a fever of 100.9. Today he is better, no fever. It seems like the fever always happens a day or so after each chemo treatment but only lasts a day. He'll have another dose tomorrow in Mesa. We're working on getting his records copied to the oncology center in Show Low so he can take it there when he doesn't need to see his doctor. That will save lots of time, money and aggravation in travel :) especially during the summer months going to the hot Valley. Yeah!

The last two days have been so-o-o windy it sounded like our home, trees and all would be blown to the Utah border. Nasty!! We needed rocks in our pockets to even go outside so needless to say, we pretty much stayed inside. Suddenly this afternoon the wind totally stopped, it became calm, cloudy and cold for a few hours and then--a white-out snowstorm, covering the ground as night fell. Crazy end-of-April weather in the high country of Arizona!

Monday, April 26, 2010

Multiple Myeloma Mayhem and Madness

Sorry for not blogging for the past several months but first of all my computer was giving me fits, then I was having back problems and couldn't sit at the computer for more than 5 minutes at a time. Well, Christmas brought me a beautiful new computer but so much was going on with Frank that I spent any time I could at the computer doing research of alternative/complementary treatments for his multiple myeloma (mm) cancer. He had been taking Curcumin and other natural anti-cancer substances for many months, including H2O2 and because his is the most aggressive form of mm [chromosome 13q deletion], I had tried many substances. When he complained, I would tell him that the handfuls of pills he was taking were the salad and vegetables he should be eating but doesn't like:)

Back in October Frank was helping to clean up the millions of fallen leaves in our yard and was lifting a huge garbage bag full into his truck to haul off when suddenly he felt a "pop" and pain in his back. He felt he had pulled a muscle because though he was stiff and sore, the pain seemed to move around, mostly in the soft tissues. Just when it started to feel better, he lifted a heavy suitcase before a trip and the pain returned in a different location. This type of thing happened regularly each time he thought things were beginning to improve. After a couple of months, when the pain had worsened, he went to his family doctor who prescribed physical therapy. I also had hurt my back again late in September and was suffering from sciatica [which I wouldn't wish on an enemy!]. We both started going to p.t. and eventually, after both of us spent Christmas pretty much incapacitated, I was improving, but his pain got worse instead of better. When he told his oncologist about the pain, he of course wanted to immediately do an MRI of Frank's spine. I had read that the contrast agent used, gadolinium, caused his type of cancer to proliferate and the malignant protein in his blood to spike. We told the doctor that we would agree to the MRI if it could be done without contrast, which he agreed to. It was done but the results were inconclusive, so a CT scan and x-rays were done which revealed compression fractures in his lower thoracic and lumbar spine. The doctor wanted a clear view of just what was going on so we finally agreed to the MRI with contrast. This showed lytic lesions of his entire lumbar spine with the biggest tumor nearly an inch in diameter. All of these were causing weakening and collapsing of the vertebrae and severe pain.

Up until this point, he had been considered being in the smoldering (or sleeping)myeloma stage. There are 4 symptoms which would indicate his cancer had become active and together have the anacronym CRAB. C stands for elevated calcium, R is for renal (kidney) failure, A is for anemia (low red blood cells) and B is for bone lesions. Up until then those had not been present and oncologists don't treat the disease because it doesn't improve the outcoome or extend life. However, with the invasion of the cancer from the bone marrow into the bones, he officially is in the active stage, which necessitates strong measures.

He was going to start Lenolidamide, an oral chemotherapy agent, which would be really convenient and he could take it at home, but decided to opt out of that when we found it would cost us several thousand dollars a month out of pocket:( He took two weeks of IV chemo (Velcade) (twice a week) and we would come home in between doses [300 miles rt each time]. It only took a few minutes to administer and he never felt nauseated from it which is a blessing, but it caused extreme tiredness and severe pain in his back and legs. After one cycle the doctor decided he needed radiation in his back to help alleviate pain and knock down the tumors in his spine so he had two weeks of that (five days a week) directed at his entire lumbar spine, administered first in front and then in back.

We stayed with his brother Bud, in Gilbert during the week and went home on weekends. During the second week he was hospitalized for 24 hours with sudden upper chest pain. After an E.K.G., scans, x-rays, enzyme tests, etc. it was determined it was not his heart, a blood clot in his lung, or pneumonia but probably a tear or pulled muscle, the results of severe coughing, as he had picked up an infection when some of our kids had come home to see him a month before. He had to make up the day of missed radiation so that took him into the third week. Then he started another cycle of chemo. . .

He always gets a CBC (complete blood count to check his immune system) the day before the chemo and after one dose of this second cycle, his white count (infection fighters) has been too low and puts him at great danger of infection without an immune system to fight it so they didn't give him any chemo at all last week. At least it saved us a couple of trips to the Valley! We'll see how things go this week. We have to go down there to obtain and hand carry an RX for a narcotic pain reliever for him, the only thing that makes life bearable.They can't fax or phone it to the pharmacy, state law. He also takes a mega-dose of Decadron (a potent steroid)once a week which hopefully helps wipe out some of the cancer cells, increases his appetite [he has lost more than 40 pounds the last few months] but also wrecks havoc with his immune system along with the chemo and radiation.

Anyway, things have been interesting here to say the least. He has a good attitude but wonders what the Lord wants him to learn from all this. We are flying to Salt Lake City in May for Kristal's husband's graduation (BS in Architecture) from the U of U. Just don't have the time with chemo [if he can take it] to make a two day trip each way and it would be too hard for him to drive the whole way in a day so we have made plane reservations. I'll certainly have to give him lots of immune boosters before the flight.

Lance and Wendy and families came home this weekend to take care of things that needed to be done: rake mountains of leaves in my flower beds, clean up chips at the wood pile, plow our garden spot, mow our huge lawn, haul off broken tree branches & bags and bags of leaves, etc., etc. Our good neighbor, Dustin, was in on the project all the way. His wife brings us tasty meals regularly, which helps perk up his appetite. Its been wonderful--so appreciated. I had been working outside when I could but there was so much to do it seemed overwhelming.