Saturday, July 30, 2011

Side-effects, again.....

I ended my last blog with "don't mention trip or vacation, to me", and here I am, on the road again! And no, I'm not alone....this honey of mine, that has MM, is along (and he's even doing some of the driving!)

My cousin, Howard, who died from Colon Cancer almost 4 years ago, used to say "I ain't sick, I just got cancer". (Now, Howard was well-educated, but he loved using his southern slang to make more of an impression.) For the past few months, my honey HAS been sick (and he also has cancer). He's been nauseous, couldn't eat (and no, it WAS NOT my cooking!), and has been like someone with the flu - except no cough, cold, temp, etc.

Thankfully, I keep detailed notes, calendars, medical logs, notebooks, etc., ad nauseum! (guess it comes from my many years as a consultant).  First, we went to see the wonderful Dr. H (Bob's oncologist), and learned that it probably wasn't the cancer. (Whew!!)

On Monday, we went to see his PCP, who really looked completely disinterested at the whole situation. Bob explained what was going on (with a "few" interruptions from me.) Having referred to my trusty records, I asked if he would put my honey back on his "old" (took it for 7 years without incident) Blood Pressure medication. Humana had taken his medication off their Formulary (would not pay for it), so in May a new BP med had been prescribed.  I had done some research (I could almost hear the doctor groan), and the "possible" side-effects were exactly what Bob was experiencing. (I'm still considering renting him out as a "side-effects tester".) He agreed, but obviously thought I was wrong, because he suggested it was Bob's gallbladder, and that he should see a surgeon. He also had Bob leave a urine specimen. (Note: Other than getting him back on the BP med, and the urine was a waste of time, and $$)
So, on Tuesday, off we go to see the surgeon. In March, Bob had a colonoscopy, endoscopy and Hidascan (gallbladder). This surgeon had visited him in the hospital when he was experiencing, as we later learned, side-effects (there's that word, again) of Celebrex. Bob's gallbladder wasn't "emptying properly", but he didn't think that was the problem, then (or now). His exact words "I can remove it, but it probably won't fix the problem'll probably still be nauseated." (Oh good, that's just what we wanted to hear.) He suggested that Bob see a Gastrointerologist, because there are "many things" (his words) that can cause nausea. When I asked "Such as?", he said "The Gastroenterologist will tell you." (Hidden answer....."I don't know") (Note: Another waste of time....and $$)

The Gastrointerologist doesn't have an appointment available until the end of August. He's sick! He's losing weight! He's nauseous! He can't eat! Are you kidding me?

My honey was feeling terrible, he was weak, and his eyes were even beginning to have that "vacant" look. He would get up in the morning, and when he got to the sofa he would lie down and go back to sleep. I was researching everywhere, and corresponding with another caregiver (in Iowa) who had some wonderful ideas, info, and suggestions. What would I do without this MM community? I was frustrated, concerned, and frightened. This was beginning to remind me of those days, before we got a MM diagnosis; when he was so sick, and I didn't know what was wrong. 

I tried to get an appointment with a Nephrologist, but learned that he needs a referral (understandable), and doesn't meet their criteria. (And, that's a good thing.....probably isn't his kidneys causing the problem).  His  GFR isn't what it should be but that, alone, doesn't mean kidney issues.

So, on Tuesday night, my honey started back on his "old" BP medication. On Wednesday, there was no instant miracle. On Thursday, he began to be a little better. Friday, he was "more" better, and Saturday morning (today), he woke up, raring to go!! 

And, this time, I said "Let's go get the RV!" It was almost as if I'd give him a shot of adrenaline. I could see it on his face....the "she knows I feel good" smile. And, before I knew, it he was taking his shower, packing his clothes and getting ready to go. Hence the reason we're on the road!

He's no longer as nauseous,his appetite is back, he's beginning to feel good.  Will this happen, again? Most certainly. Somewhere down the line, something new will be prescribed, and we'll go through another episode. It's frustrating, irritating, frightening, all of these adjective, and more, but as long as it isn't the cancer, we can deal with it, if we know what "it" is.

Strange, how something as simple as Blood Pressure medication can potentially be an issue. We see the advertisements on television, everyday, of the possible side-effects of various drugs. Bob's cancer (and his sensitive digestive system) has taught me to be very cautious, and aware, of the potential danger of every drug. At the time his Blood Pressure medication was changed I voiced my opposition, and concern, and deaf ears were turned - so I'm not saying "I told you so!" (Oh heck, yes I am!!)

My honey is feeling better - he's eating, he's not nauseous....and that's what's important. Thankfully, it isn't always the cancer......maybe it's just the side-effects, of something else.....

Saturday, July 23, 2011

You want me to do what?????

Just exactly two weeks from the day we left home, we returned home. What?? Weren't you planning on staying a month?? Yes, in fact, we were.

I think my honey thought this trip would be magic. We'd take off in this rolling hotel (RV) of ours, with him at the helm (most of the time, I drive .....the car), we'd stop along the way at Rest Areas, and have breakfast or lunch.......just like we used to do.......before cancer.

He got tired, as we loaded, but I thought nothing of it. I got tired, too. He said he felt okay, and he seemed okay....and silly me....I listened, and I believed.

So, on Thursday morning  - just two weeks ago - on the road we went. He seemed okay. He looked okay. He even acted okay. The man shoulda' been an actor!

We finally arrived at our campground, near Hillsville, VA on Saturday about noon. He seemed okay. He looked okay. He acted okay.

He was tired, and he rested, and I thought nothing of it. After all, Myeloma causes fatigue, and weakness, and so many other things. And, it had been a long trip, and I was tired.

One week from the day we left home, we went on our first excursion up in the mountains. (That really was a clue that things weren't as good as he was pretending.) We didn't go to the Blue Ridge Mountains, which were to our East and South......but to the Appalachian Mountains which were back to our West. I drove. Because he tires easily, it was really just a road trip and a visual experience. We never were into hiking, so not being able to climb the mountain didn't bother me. After all, I have an excellent Treadmill, in my bedroom, and it's such a great place to hang clothes and is in air conditioning, why get all hot and sweaty, outside!

For the next few days, he sat and rested....or slept on the sofa, in the RV. And, he started doing something that he hadn't been doing. He began to ask for a pain pill when he first got up, in the morning. He finally quit, as our friends like to say, "putting on a front" and began to admit that he wasn't feeling good - and really hadn't felt good for some time (even before we left home).

I began to ask "do we need to go home, while you can still drive this thing?" (I drive cars....not RVs). So finally, on Wednesday (just one day shy of two weeks from when we left home), my honey decided that we needed to head home - so he could get back to his doctor. And, because he really was no longer able to drive the RV......bless his's still on vacation, in VA!

Was I upset? Yes, a little. But, I realized that this was something he was trying to do for me. He wanted things to be as they were ....... before cancer. But our life has changed.......nothing is the same.

We have taken three vacations in the past year. The first vacation, he got sick and we came home to a diagnosis of Multiple Myeloma. The second vacation, he got sick and we came home to see the doctor. This was the third vacation, and he got sick and had to come back to the doctor.

Please, please, please don't mention the words trip, or vacation, to me.......I'm just not sure how I might react. You know what they say, "All's well that ends well"....well, so far, these vacations haven't ended too well.

Friday, July 15, 2011

A beautiful mountain ride ended with reality.......

At 5,729 feet, Mt. Rogers is the highest point in Virginia. Yesterday, it was our mission to get there, or as close as possible. There is no road, to the summit, so close meant "visually close". We left Hillsville, headed west on Hwy. 58, and soon saw a sign stating that Bristol,  VA was only 107 miles.  We discussed that this might be a new route (in our RV) when we started back home. After many miles of highway as "crooked as a dog's hind leg", with speed limit warnings of 15 mph, there were no more discussions of trying to navigate this road in a Motorhome!

Christmas Tree farms, with acres and acres of trees that seem to cling to the mountainside, dotted the landscape.

Looking east from Sugarland Overlook
in Grayson Highlands State Park, the
valley and, in the distance, the Blue
Ridge Mountains.

We stopped at Grayson Highlands State Park which borders Mount Rogers National Recreation Area on the south. There are 9 hiking trails in Grayson as well as access to almost 3 miles of the Appalachian Trail, which runs from Georgia to Maine. 78 miles of the Appalachian Trail lies within the Mount Rogers NRA and is only 1/2 mile from the summit of the mountain.


The Virginia Creeper Trail,  a 34 mile hiking - biking trail converted from the Norfolk and Western Railway roadbed also traverses the Mount Rogers National Recreation Area. The trail starts in Abingdon, Virginia and ends near the North Carolina state line.

Ever so often, an old settler's cabin .....from days long past......would appear.

From the beauty of the mountains, the church steeples with the mountains as their backdrops, the creek beside the highway rushing over the rocks.......we were suddenly back to reality. The tornadoes that struck our towns in Mississippi and Alabama, in April, had made their way to the mountains of Virginia. Trees had been splintered, as if they were match sticks. Houses had been blown apart and leveled. Semi-trailers had been crumpled, as if they were toys in the hands of a child.

On one side of the, and on the other.......tragedy

Thursday, July 14, 2011

A different kind of journey.....

With the Motorhome loaded and "road ready" we were both excited to get on the road, again. We left home early on Thursday July 7th (one week ago, today), headed for the mountains of Virginia,  near the Blue Ridge Parkway.  We met our friends, Sam & Ann Greco, at a Rest Area in Alabama and had our first (this trip) breakfast.

Our first night out, we stopped at beautiful DeSoto State Park just outside Fort Payne, Alabama. What a great place to camp........clean, well-lit with wide, asphalt pads under the trees, and cable tv! (Camping, at its best!). Hidden in the Alabama mountains, deep in the forest are canyons and waterfalls, beautful rock formations, hiking trails, and wildlife. As night fell, we were serenaded by cicadas, tree frogs, and somewhere in the distance, two owls called to each other across the mountain.

Fort Payne, AL Train Depot - restored

 How I would have loved to have time to wander the streets of Fort Payne, with its quaint little shops, antique stores, and the 'Alabama' museum. (My 'bucket list' just grows and grows!)  We left this beautiful park, with a promise (to ourselves) to return. How picturesque it would be, in the fall, with the mountainside bathed in shades of red, yellow, and orange.

We made our way through Chattanooga -  navigating Interstate 24, always busy, regardless of the hour. We stopped for fuel in Cleveland, TN and had our first real "irritation" of the trip. The station advertised diesel, at a pretty decent price (not as good as at home, but not bad). As we, and two other big rigs pulled into the station, everyone realized we could get in.......we just couldn't get out!! We unhooked our tow vehicle, and backed the RV out ...... but not before I entered the station and "suggested" to the clerk that they should post a warning "No Big Rigs". (He barely looked up from his newspaper.....I'm sure it wasn't the first, and won't be the last, complaint.)

We had driven under cloudy skies most of the day (a great shield from morning sun). Finally, about mid-afternoon the deluge came - slowing our travel down, considerably. With about 3 hours remaining on our trip, and our final destination in the mountains.....the decision was made to stop for a second night. We spent night number two at Rocky Top Campground near Bristol, TN. A great little RV park with such friendly hosts....too bad this wasn't our final stop!

We arrived at Lake Ridge RV Park, in southwestern Virginia near Hillsville (and there is a reason it was given that name!), about noon on Saturday. The Blue Ridge mountains, in the distance to our south and east, looked as if they had been dusted with blue powder, and then covered with a tent of dusty haze. The tall peaks rose, as if stretching for the sky and then dropped into deep valleys. I imagined dozens of hikers, heartier souls than I, climbing to the mountain tops and looking out over this valley in which we camp.

And then came the joy of trying to get our Motorhome into the reserved, tree shaded spot. (Long story - short - it didn't happen!) We unhooked our tow car, and I followed behind ..... up one hill and down another, as Bob and the RV followed the guide in the Golf Cart. In many RV parks, if it's necessary to back in.....a guide is there to assist. As the guide pointed out the spot, and Bob began to back up - I realized, as our RV exhaust and backend was digging into the dirt, the guide must have considered his job done. He remained in his Golf front....oblivious to everything happening, in the back. I quickly parked and got out of the car.....yelling like a mad woman.  When he understood that our Motorhome wouldn't fit into the reserved spot, he decided that Bob needed to pull forward and continue down the road, to another spot. Thankfully, a bright young man came along and told him "that won't work ....there's a drop off up there!" (Obviously, this guide needs training.....bless his heart!)

We finally got parked, without assistance, but there are no trees to shade us. (And yes, I did comment that we could have stayed in our own yard if we were going to park, in the sun.) But, I was very gently reminded that we wouldn't have the Blue Ridge Mountains, as a backdrop. There are just some arguments a girl can't win!!

Bob is doing great - the exercise (climbing up and down the steps of the RV) is helping tremendously. He tires, just as he does at home .....but he knows his limits and knows when to rest (and, he has his "little white pill" for emergencies!)
More adventures to follow.....

Saturday, July 2, 2011

Just two months, and three weeks.....

was how long Bob's "Near CR" lasted. There are just some things that one knows, in their 'gut', and this was one of those things. He had begun to have pains reminiscent of earlier days, and he so often felt bad. So, when I made my "executive" decision to get him back to Dr. H, ahead of his regularly scheduled appointment, it was because I felt that things just weren't right.

On Tuesday, we learned that his M-Spike has begun to creep back up. It's only 0.3, but we'd much rather it had stayed at nothing! We have a trip planned to a beautiful RV park, in the Virginia mountains, near the Blue Ridge Parkway. We're continuing with our trip plans, with Dr. H's blessings and urgings. Breathing that fresh mountain air and getting away from the humdrum of everyday life is always good for the soul, and maybe the health, too!

The timing of The Myeloma Beacon's article "Early Relapse May Be Linked To Shorter Survival In Elderly Myeloma Patients" could not have come at a worse time, for me. There are things I read, that I never tell (Bob) and this was one of those articles.

Tuesday was the "I can't believe this is happening, again" type of day. As the renowned MM Specialist stated, there is tremendous anxiety among Myeloma patients ........dreading relapse......and then, it actually happens.

We knew those cells could start to proliferate, again, we had just hoped it wouldn't happen so soon. We'll enjoy our trip, each other, and the mountains.....and when we return we'll hope that the good mountain air has taken away his need for more Chemo! (I can dream, can't I?)