Wednesday, November 21, 2012

Giving thanks, for more than just one day.......

We made it through October! We lost a dear friend, but nothing bad, traumatic, monumental, earth-shattering, or even mildly disconcerting, etc. happened in our house.  For those of you, unaware, October is generally "the" month. If it's going to happen, it happens then.

I remember when I first began this blog, I read on the blog of another that MMers and caregivers tend to blog less when "things are good". At the time, I thought "that's not me.....I'm wordy, I'll write". Today, I realized he was right - I am blogging less, because there's really not much to say. For that, I'm extremely happy!

We moved our Motorhome back to our house at the end of October after a month's stay on the beautiful MS Gulf Coast. As I've often written, we never know if plans we make will happen - so nothing is "concrete". Plans are made - to be broken!

Ever since his diagnosis, Bob has had so much trouble with his legs. They always seem to hurt, and he has such a hard time moving around. Sometime ago, on the Multiple Myeloma Support Group FB page, someone offered a suggestion regarding a supplement prescribed by the Dana Farber Cancer Institute, for MM patients experiencing neuropathy.  I searched for, and found, the Acetyl L-Carnitine HCI - 400 mg w/Alpha Lipoic Acid - 200 mg. and began giving him one in the morning and one at night (after first consulting with his doctor, of course). Just a little under a month, and his legs are so much better. Nothing else, in his medication regimen has changed it has to be these little gems that are working! I've learned that it really is (pardon this expression) a "crap shoot" .... just never know what will work and what won't. And, things that work for one patient have no effect on another.

With my honey doing so much better, we decided to try (that being the operative word) another RV trip! This time with Texas, and our youngest daughter as the destination, while the weather was still good and with Thanksgiving approaching. I had to be assured that Bob could handle the driving (that isn't my job).  I've become very adept at helping him get set up, after we arrive, and I'm a great co-pilot (you know the kind - I'm good at "move over - you're too close to the edge, get off the center line,  Bob!! you're too close to that truck, OMG!!) He just laughs.....and ignores me!!

With three puppies, I really think he had the easiest job - even with me "trying" to tell him what to do. I rode, from Mississippi to Dallas, with a pillow and 3 dogs in my lap. There were four of us in the seat, and three were comfortable - you can guess which three!

The drive across east Texas, after stopping, for the night, in Bossier City, LA was so pretty. I've never thought of Texas as a place to take a "Fall Foliage Tour", but the trees were absolutely beautiful. The yellow oaks, orange leaves of the sweet gum and red maples against backdrops of pines were stunning.

We arrived at our campsite, in the Dallas area, about mid-afternoon - ready to see our baby-daughter (42, but still our "baby"). My honey was tired - but he had done it!

MM has made so many changes, in our lives, but it has also made us so appreciative and so thankful for anything/everything/many things. I appreciate everything that my honey is now able to do .... and I tell him so. I thank him for trying. I know there are times that he hurts, and he's tired - but he tries to keep going. I'm thankful. I'm thankful for everyday that I have him.

Happy Thanksgiving to all of you - just thankful for every day!!

Thursday, October 11, 2012

We don't really like October.......

We entered into the month of October with a bit of trepidation, and rightfully so. This past week, two years ago, we were back and forth to the doctor searching for answers. We had just celebrated our 50th Wedding Anniversary, took off on what was to be a great adventure in our RV, and things began to go downhill from there.

October, 2010 was the month my honey was diagnosed with Multiple Myeloma, and began to face the pain and treatment that accompanies cancer.

October, 2011 - one year later - back in our RV and on the beautiful MS Gulf Coast......he became very ill.  Pneumonia, Renal Failure, and later, a Staph Infection, provided him with a "most expenses paid" three week stay in the hospital.

October, 2012 - two years later - back in our RV on the MS Gulf Coast (stubborn and determinded).  Enjoying beautiful weather with newfound friends - people who had come to enjoy the week long 16th Annual "Cruisin' the Coast". Over 6,000 antique cars and trucks representing 37 states and hundreds of cities and towns converged on the cities along the coast.

This October, my honey is doing good - pain pretty well under control (with meds), no illness or infection, and still in remission. He manages the fatigue, weakness and instability that seems to accompany his disease.

Unfortunately, yesterday we realized this October was to be no different than the other two. It has been marked by sadness at the death of a dear friend, Kermit Littleton. He and my honey had been friends for over 60 years. Kermit was diagnosed with cancer just 8 months after Bob's diagnosis, and he didn't live quite as long as the doctor predicted.

Bob, Kermit, and Sam .....together for the last time ...... May, 2012
Next weekend we, along with the third couple of our group, Sam and Ann Greco, will head to the north Georgia mountain town of Ellijay, to celebrate Kermit's life and surround his wife, Nita, with our love. We'll say goodbye as his ashes float in one of the trout streams, where he loved to fish.

We'll be happy when October is behind us........

Thursday, September 6, 2012

Making Adjustments.....

“Happiness comes from... some curious adjustment to life.” ... Huge Walpole, Sr.

During the almost two years that we've been dealing with my honey's MM, we've waded through many "curious" adjustments.  Prior to his diagnosis, I'm not sure if I'd ever heard of Multiple Myeloma - but I knew, just by the suffix  'oma', it was some type of cancer.  I was definitely eager to learn more, I HAD to learn more. I HAD to know what he (we/were) was facing.

I became very inquisitive, not only of his doctors and nurses, but of others who were also dealing with this rare form of cancer. I was thankful for my computer skills and quickly learned that everything online shouldn't be construed as gospel. Being inquisitve, and prying, took me to great Myeloma websites, lists, blogs, and put me in touch with other patients and caregivers on this same journey. 

I now see others, on the various Myeloma websites, that have the same curiosity and are just as inquisitve as I was. I encourage curiosity and inquisitiveness, and I advise that everyone keep in mind that changes, improvements, advancements are being made everyday. It's wonderful to read that MM may soon be thought of as a "Chronic Disease".

We've had to make many adjustments to both our lives, while on this journey. One begins to understand that the damage the Myeloma causes to the bones may mean that former activities, once enjoyed (like golf or working in his shop), may no longer be possible.  Walking long distances can cause pain and may even be impossible.  Fatigue is a big issue, while balance and stability are even more so. Just recently, while getting ready to FINALLY try and get our RV back out on-the-road, my honey had a terrible fall in our kitchen. It can only be best described as a "stumbling, staggering, trying to stop falling" type of fall. It started at the kitchen door and ended when his head slammed into a cabinet across the room, and his knees hit the hard tile of the floor. Thankfully, no broken bones - just bruised and swelling and off his feet, with legs elevated and with ice packs to try and alleviate the swelling.  This sudden, unexpected, (certainly not needed) fall has caused a set back.

And just as we have had to make adjustments for him.....I've made them for myself. No longer do I feel that I can "jump in the car" and go somewhere. Even though he would probably be okay,  I don't leave him alone for very long periods of time.  That's an "adjustment" that I haven't been very successful in making for myself - that feeling that he shouldn't be alone. I'm working on that one!

            As another caregiver/blogger wrote, life tends to become a balancing act. We begin to realize that life isn't what it once was. We do what we can, when we can. We make adjustments. We often make plans that are unable to be kept.

Things that my honey once did, or were his responsibility, have (in many cases) either become mine.....or often just don't get done. He isn't supposed to lift anything that weighs more than 10 lbs. That's quite an adjustment for him, and he doesn't always adhere to that restriction. After all, it isn't very "manly" to allow a woman to do the lifting of heavier a case of bottled water, etc.

Accustomed to going wherever we wanted, whenever we wanted, is no longer possible.  My honey is unable to ride long distances (we loved road trips), unable to sit for very long, unable to stand for very long, unable to walk very far ....... you get the picture.  We've had to adjust for all these new inabilities.

As Sean Murray, another MM "victim" and blogger,  wrote in his column in The Myeloma Beacon, we've had to "say goodbye" to life as we knew it.

We're learning to balance this life with the days, weeks, months, and hopefully years that my honey has left.  It isn't easy to "say goodbye" to the life we knew and enjoyed.  Probably the best adjustment has been to learn to enjoy the life we have. Treasure each and every day. Take nothing for granted.

Happiness absolutely is whatever curious adjustments you need to your life (let's just hope YOUR life doesn't include MM!)


Thursday, July 26, 2012

The best news, ever......

On  Tuesday, my honey had his long day at the Cancer Center.......Infusions of Zometa to strengthen his bones and IVIG to boost his immune system. All the monthly labs were done.

He has been on a "Chemo Vacation" since May 26 - exactly two months, and he's still in remission....CR, whatever......his numbers are, great.....his labs are great!!

He's feeling better, by the day. He's up and around.  (Yes, I'm knocking on wood, as I report jinxing this time!)

Thank you for all your prayers, and good thoughts...and Thank you Lord!!

A Handful of Spoons............

A few months ago, I was honored to be a judge in the WEGO Health Activist competition.. A Health Activist may be a caregiver, a patient, a medical professional, a family member, a friend, Relay for Life participants - anyone who promotes awareness, or cares about those with various illnesses, diseases,  health conditions, or disabilities.

There were so many illnesses and diseases of which I had been unaware, until my participation in this online event. The competition, and awards, recognized individuals taking extra steps to promote awareness and provide information through many different avenues, both in person and online in blogs or web pages.

Christine Miserandino, afflicted with Lupus,  and the originator of 'The Spoon Theory' was the winner in her category of Best Affirmation Post.  This young woman has been very creative in her use  of spoons to explain her illness and how it affected her and her abilities.  Healthy individuals are able to go about a daily routine  without a need for medications. People with illness or disabilities have to plan their day, and most often aren't able to accomplish the most minimal of tasks either because of pain or a disability.  Those of us, living a normal life - without illness, have an unlimited number of "spoons" to get us through our days. 

What a brilliant idea! Why hadn't I thought of something like this! 

I began to think of ways to use the Spoon Theory to define Bob's Multiple

Christine's Lupus is painful and debilitating and requires her to plan her days, much the same as Bob.  Each morning, he picks up an imaginary handful of spoons when he awakens.  Just to get out of bed he must give up a spoon. Standing up straight, and waiting so he won't be dizzy, uses another spoon. The spoons he has left must take him through the day and all the things he needs to do.

He slowly walks to the bathroom - using another spoon. Each activity - washing his face or brushing his teeth, uses a spoon.  If he feels well enough to take a shower, and get dressed, it uses more spoons.

A trip to the kitchen, eating breakfast, taking his meds - each must use one of the spoons he is holding.  Every activity that we take for granted, uses a spoon for someone who is ill, or disabled. Some days, there just aren't enough spoons to make it through the day......but on other, better days there may be spoons left over. Those are the good days!

Christine's 'Spoon Theory' actually helped me to realize, and understand, what my honey must be going through. If I were given a handful of spoons to allot to each activity of my day - I'm sure
there would probably be days when I'd be sitting, in my chair. Days much like those that fill the "new normal" of my honey's life.

I'm thankful that lately, he seems to have spoons left over. These days, he isn't using his handful of spoons. I'm thankful for Christine and her analogy of spoons and how they can relate to illness and pain, not just for my honey - but for anyone with an illness or disease.

Strangely enough, Christine's blog is entitled 'But You Don't Look Sick'. Often, my honey is told how good he looks.........but nobody knows how many spoons he's had to use that day!

You can read Christine's 'Spoon Theory' at

Monday, July 16, 2012

Living Life...........

If I've learned anything about this disease and the effects on the "victim", it's that one should not get too excited when good things happen because they can be short-lived.

Jumping right to the good news first - my honey is still in remission (Complete Response), so the vacation from treatment can continue.

Looking back over my journal, and calendar, and notes of the past 21 months since my honey was diagnosed, I've noticed even though he has responded well to treatment, there have been many not-so-good days.  Fearing the bad days might outnumber the good, I elected not to count.

He has been in remission for several months but seldom feels good. So frustrating - for both of us!  Remission was supposed to return our lives to normal, or so we thought.

"What good is it to cure a patient's cancer if the process leaves him or her incapable of living life?" Leslie J. Waltke, PT

My mission, as his Caregiver, was to try and find the reason since the good Dr. H., seemingly in bewilderment, could only shake his head. I took away every drug that I possibly could, without endangering his life, (didn't stop the pain meds, or the BP med, or the Diabetes med, etc.)  all to no avail. Time to look elsewhere.......

When we met with the NP at his Pain Mgmt Specialist's office, we discussed the need for more Dilaudid for breakthrough pain, as well as how badly he seemed to feel. We questioned if the pain meds could be the reason for his never feeling good. (The morning of our appointment, he felt so bad that he sat in the chair and slept while she visited with me). She questioned his low dosage of MS-Contin (15 mg. every 8 hours).  His Pain doc decided to increase the MS-Contin dosage to 30 mg every 12 hours and discontinue the Dilaudid. His pain is under control with the increased dosage, and discontinuing the Dilaudid seems to have made a difference in how he feels.  Amazing.....he had been on this med for well over one year. We could have stopped it (had anyone known) and he would have felt better! You're kidding me!!!

In the meantime, he had Cellulitis in one of his toes and this required an antibiotic, which caused dizziness!  The antibiotic was completed the end of last week, and the dizziness appears to be getting better.

He's actually doing pretty good. He's in remission. His kidneys are functioning. His pain (other than his legs) is under control.  He hasn't been to the hospital in 5 months! His appetite is pretty good. He looks good. We may have settled into that "New Normal" stage of our journey. Things are pretty stable....., if we can just get back to "living life" part of this "new normal", it will be good.  Living life entails getting up out of this chair to which he has grown so accustomed. I suggested maybe it was time for some Physical Therapy and was met with resistance. So, I've started my own type of "Positive Re-enforcement Therapy". I tell him how good he looks. I tell him he "looks" like he feels better. Some days it works - some it doesn't.

Therapy can come in many forms, and the latest"addition" to our family are really trying to do their part to bring a smile to both our faces. We rescued "Wee", age 2, and "Precious", age 5 months, both Toy Pomeranians. They get us up, out of our chairs, and help us to focus on something other than the roller coaster ride of MM.

How great it would be just to get on with living life, whether it be normal or new life!!

Sunday, June 24, 2012

It's our life.....

I read a post on another caregiver's blog.....she's taking a break and stepping away from blogging, for a bit, and I guess that's what I've done. We care 24/7 for someone with cancer. We don't know, exactly, how our patient feels.....but we can see by the grimace on their face, or hear the heavy breathing, and know the pain is there. We feel the pain of being unable to do anything, except offer the medications they've been given .....and hope that they find relief, if only for a short while.

In early April, my honey had his 2nd Spinal Lumbar Radio Frequency Dennervation (nerve burning) or RFD for short. The first one in February, 2011 worked wonders and helped to assuage some of the pain, in his back.  The RFD can be effective for 12 - 18 months, and can only be done once per year. By the end of this past January, we knew that the procedure was going to be necessary a 2nd time, and we held out great hopes that it would be as effective as the first one. Unfortunately, it seems that it isn't working as well this time. Thankfully, he has his "little blue pills and little white pills" that make the pain a little more manageable.

He also has ostopenia/osteoporosis which has been made worse by the MM. Standing too long, or walking too much, causes great pain. He's now on CO-Q-10 and a nasal spray, which are both supposed to be helpful in treating far, no luck.

He has been on steroids for many months, and Dr. H. decided to give him a break. The oral dosage, plus the steroid injections in his back, have played havoc not only with his blood glucose but also with his emotions, and just his feelings in general. I had begun to assume that was the culprit so was very happy when the decision was made to suspend them, for awhile. Unlike most MM patients, the Dex never seemed to affect his ability to sleep!  LOL

He's been in remission (or Complete Response, as it's called) since the fall of 2011, but has continued to be on a maintenance dose of Revlimid. Because he constantly feels bad (like someone with the flu), Dr. H. gave permission to stop his Chemo for awhile....or until his M-Spike begins to edge back up. (It would be great if that never happened and miracles do occur, but it's highly unlikely). Dr. H. thought it unlikely that the Revlimid was the reason for his never feeling good, and I'm sure he's probably right since my honey felt bad way before Revlimid became a part of his life. He's had tests, of all sorts, and everything seems to be fine.....other than the fact......he has cancer,  feels bad, and of course...the pain.

It's frustrating. It's often depressing. It can be debilitating. It's Multiple Myeloma.

He tries, extremely hard, to "continue with life"......but he spends lots of time, in his recliner resting and/or sleeping. This is the "new normal" that MM patients, and their caregivers, learn to live with. 

Tuesday, he sees Dr. H at the Cancer Center and he will have been off Revlimid for one month and Dex for over two months. Hoping and praying that his M-Spike is still zero so his vacation from treatment can continue.

It's frustrating. It's often depressing. It can be debilitating. It's Multiple Myeloma. It's our life, and we're still thankful for each and every day.

Sunday, April 8, 2012

Before our journey ends.......

Exactly 18 months ago yesterday our lives were forever changed; when we began this journey. Like most, we knew that  Bob had just been given a diagnosis of cancer, but we knew nothing about this incurable though treatable, and often even called chronic, disease. How quickly we began to learn!

We learned early on, that everything on the Internet isn't the gospel and shouldn't be trusted. We found great Myeloma websites, and blogs, with information and support from other Myeloma "victims" and caregivers.  We've been surrounded by wonderful friends, caring family, and above all ... great doctors.  Finally, we learned that sometimes there are comments, and people, that we just have to ignore.

It has often been a stressful year and one-half filled with everything from the initial diagnosis to pain and infections, both of  which are not uncommon for Myeloma patients. During this leg of our journey, we've had quite a few hospital visits. Again, not uncommon for Myeloma patients. I was even beginning to think we might get a "frequent visitor" card! Other than being on a first name basis with a great group of nurses, there are no added benefits.

Bob's back pain has begun to be almost constant, even with pain meds. On Wednesday, Dr. S. will perform another RFD (Radio Frequency Dennervation) which will hopefully bring much needed relief; as it did in February, 2011.

There are days when my honey doesn't feel good, but on many of those days he makes an effort to go to his shop. Hearing the sounds of the sander, planer, saws, or even the "elevator music"that plays on the television in his shop allows me (and maybe both of us) to forget, just for a minute, that he has cancer. The cancer that invaded his body hasn't taken away his ability to design and build beautiful just takes longer.

Cancer, regardless of the type, can be debilitating, painful, stressful, and emotionally draining on everyone involved.  Amazingly enough it also provides time........time to focus on the really important things in one's life. Time to realize that nothing should be taken for granted. Time to realize that each day is a blessing. Time for each other.

The next part of our unplanned journey begins as this beautiful Easter Sunday ends.  We can only hope and pray, that somewhere along the way, a cure will be found............before our journey ends.

Wednesday, February 1, 2012

Remission .......this different place

Several blogs have been written lately by the Myelomaville People (that group of people that are either "victims" of MM or are caregivers of those victims) about Remission, and the affect on them, or their patient. Lori Puente, a good friend, designer and weaver of beautiful scarves, great blogger, (Riding the Wave), and expert caregiver on this journey for several years, with much valuable information, had a quote on her blog recently that "remission is an awkward place". I had never thought about it in that light ......but I realized, after reading her post, that's exactly how it is.

We, as the caregivers don't actually know what to expect, and I daresay the patient does either, during that time. There are several different definitions, on the web, for remission. The one that I seem to connect with, the most, is from Wikipedia. Strangely enough, it's under the definition for "Cure", and remission definitely does not mean cure.

A remission is a temporary end to the medical signs and symptoms of an incurable disease.

I would agree that remission can be a temporary thing, but I'm not so sure it means an end to
all the medical signs and symptoms. And, that is why remission is an awkward place. Remission, in our house, has not meant an end to fatigue, or pain, or feeling bad. Remission hasn't meant being back to "before cancer normal". I finally know what others, on this journey much longer than we, mean by the "new normal". The "new normal" is doing whatever one is able to do.

The "before cancer normal" was being able to play 54 holes of golf, in one day. The "new normal" is unable to play golf. The "before cancer normal" was always being able to drive. The "new normal" may not be able to drive. The "before cancer normal" was able to walk long distances. If the "new normal" walks even as much as one-half block, he's in tremendous pain. The "before cancer normal" got up very early every morning, went to his shop, and worked at least 8 hours. The "new normal" sleeps later and on days he's able to go to his shop, he may only be able to work 2 - 4 hours. The "before cancer normal" could lift anything. The "new normal" isn't supposed to lift over 10 lbs.  The "before cancer normal" loved road trips. The "new normal" is unable to ride long distances.  

My honey was first deemed to be "in remission", in April, 2011.....exactly six months after he had been diagnosed with MM.  Looking back, I think it was probably only "partial remission", because all his numbers weren't good, and he relapsed after less than 3 months. He was devastated. He knew that there isn't a cure, but I think he thought it might just "go away".

I've often written how he isn't always good about sharing how he feels. But after 15 months, I've learned to read the signals. He may not tell me, but on those days when he stays in his pjs, or is resting on the sofa most of the day......I know it isn't a good day. And when he needs more of his "little white pills" in order to endure the pains, in his back, I know it isn't a good day.

After just two cycles of Revlimid he's once again in remission. This time, all his numbers are great, and I believe he's in 'Complete Remission' or, as his onc. states, "Clinical Complete Remission". Meaning that all his simple blood tests are good, but no Bone Marrow Aspiration has been done. He's living a "new normal" kind of life on the days that he is able.

I resist allowing my mind to wander to the time when he may relapse from this period of remission. I'm living my own kind of "new normal" as a caregiver, medical researcher, pill giver, cheerleader, and optimist. Remission is definitely a different ......awkward place, but I'm so glad we're there.....for a little while, anyway.

Sunday, January 22, 2012

This is how it goes.....

I check the blogs of several other Multiple Myeloma caregivers, and patients, and in doing so realized that I hadn't written anything in almost a month. That's good! Means that things are really pretty quiet on this MM front.

My honey finally recovered from the maladies that were plaguing him.....and it's evident by the fact that he's getting bored. He's ready to get back out into his shop. I've been pretty successful in getting him to wait until the weather is better and those shop doors can be open to allow the dust and fumes to escape. (No more pneumonia or bronchitis needed!)

Last week, our Gorrell RV Park was open for business and Sam and Ann Greco, friends for many years, came and spent the week with us. We always have a good time sharing the cooking chores and playing cards (Pegs 'n Jokers), at night. Finally, it was like old times ....... with Bob feeling good (B/C).

On Friday night, we had our first night out in many months. For Christmas, our PA daughter and her family had given us tickets to a Kenny G concert at the Beau Rivage, in Biloxi. We spent the night at the Marriott Courtyard. I'm the primary chauffeur, and I had no interest in a 2 hour drive home, late at night. It was a wonderful concert.......and made me feel like things were almost "normal". My honey now walks slow, can't do a lot, but we were "out and about"! (Went to 'Mikey's on the Bayou' in Ocean Springs and had delicious Gumbo and Shrimp PoBoys.)

Maybe we did too much. He hasn't felt very good the past couple of days but this is really how it goes, at our house. One day we're up, and the next we're down, even though his numbers still look good. 

I think this is just how it goes.......with Multiple Myeloma.

Wednesday, January 4, 2012

Finally, the end is near.......

From the Friday before Christmas until now......"we" have been dealing with Pneumonia/Bronchitis. My honey spent one night, in the hospital, and I think the IV fluids/antibiotics did wonders to help turn him around and begin to get better. He isn't great about "sharing" information (I'm still searching for that class in ESP or mind-reading), but when you've lived with a man for over 50 years, you begin to be able to read some of the signs. He's talking more, and it doesn't seem to hurt so much when he gets up out of a chair (lungs are getting better).

He was supposed to use the Isometer every hour that he's awake .....and I'm just sure he's been awake for more than 2 - 4 hours in a day.....but that's about how much it has been used! I'm not sure why he hates that little device so much - but he does.  My "Hester" stubborn streak (one of the things I inherited from my mother) appeared, and I decided that he is an adult.....knows he needs to do I'm not saying a word!! Thank goodness, he's getting better without it. 

His appetite is non-existent and food makes him nauseous. This isn't anything brought on by the Bronchitis, so it's probably a side-effect of one of the antibiotics. Thank goodness, there are only a few days remaining. We're currently on an oatmeal, grilled cheese sandwiches and chicken noodle soup diet.

If he HAS to be sick, winter is such a good time. It's a great time to stay indoors - lots of pajama days in front of the fire. How miserable it would be if the weather was good, and he didn't feel well enough to be oustide.

Now, not that I'm a pessimist, but I have to wonder.......what's coming next?  We're finally nearing the end of this Pneumonia/Bronchitis thing......and I'm just hoping that there's nothing else planned (God's plan) for him, in the near future. Dear God....please let him be well, for a little while.